What Do You Know About Disability Cultural Competence?

Recently, I had the opportunity to give a webinar on disability cultural competence to social service workers, but was met with many blank stares. As a disabled social worker myself, I often notice that the disability community is not recognized as a cultural group. Disability is also not considered as a social identity in diversity considerations, despite the ways the community feels about it. Frankly, our field has a long way to go when it comes to developing disability cultural competence. Let’s see if we can change that.

Why the We Need to Prioritize the Disability Community

You may be asking yourself, why all the focus on disability? Well, the disability community comprises 26 percent of the adult U.S. population – that’s one in four Americans according to the Centers for Disease Control. Among children under the age of 18, estimates suggest that 4.3 percent of the population is disabled according to the U.S. Census from 2019. This means that social services workers are interacting with the disability community all over! It’s also important to note that disability transcends race, ethnicity, gender and other social identities, as seen in the graphic below (courtesy of Courtney-Long, Romano, Carroll, et al., 2017). So we need to remember to be intersectional in our  practice – these are not siloed communities.

Courtesy of Courtney-Long, Romano, Carroll, et al., 2017

Importance of Disability Identity

I’d like to transition now to talking about the importance of having a disability identity. Some people identify as disabled from a cultural perspective. Some people are not even aware that this is an option and you can open their eyes to the world of disability as a resource for them. In other words, for some, this is a missed opportunity to connect to a supportive network. For others, it’s a choice not to identify as disabled either due to stigma, internalized ableism or other beliefs. The idea is that developing a strong disability identity is super helpful with your long-term well-being. And in order to do this, you have to both connect with the disability community and with disability culture. So what is that?

What is Disability Culture?

 

In short, disability culture is the “sum total of behaviors, beliefs, ways of living, & material artifacts that are unique to persons affected by disability.” It’s essential for social service workers to be tuned in to disability culture so they can leverage it to connect with their clients. And let’s be clear, disability culture does NOT consist of disability service programs. Where we really see disability culture come alive is on social media sites, such as Twitter and Instagram. You can follow some of the major disability culture hashtags to see the dialogues and debates that are hot in our community right now, such as: #DisabilityTwitter; #DisabilityVisability; #DisabilityAwareness; #IdentityFirst; #DisabilityLife; #Spoonie,#SpoonieLife, and more.

You may notice that the last two hashtags included the word “spoonie.” This derives from “spoon theory,” which is an actual theory based on a metaphor about how much mental and physical energy a person has to accomplish their activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The disability community talks about how many “spoons” they have as a unit of measurement of energy – and sometimes refers to themselves as spoonies. Please note that in teaching you this, I am helping you to develop your disability cultural competence.

How Build Disability Cultural Competence

Other ways to build up your disability cultural competence are to check out the Disability Visibility Project, which tells the stories of diverse members of the community in wonderful ways. And there are a range of organizations, such as Sins Invalid, which founded the disability justice movement. You can also read the 10 principles of that movement in this short document. This will help you to tune in to the disability pride movement. We have a pride month and a pride flag too, it happens in July.

When it comes to engaging in disability competent practice, we need to develop knowledge about disability culture and disability history. We can also consider taking the following steps to round out this competence:

First, we need to examine our own attitudes about disability and engage in reflective practice around that. You can consider your own implicit bias about the disability community through Harvard University’s Project Implicit test about ableism, or through social worker Vilissa Thompson’s guide to checking your own ableism.

Second, developing disability cultural competence over time also includes a careful look at the terminology we are using and respecting disabled people’s choice of identity-first language in many cases. You can read more about that here and throughout that site. The Harvard Business Review also has a thoughtful essay on why you need to stop using particular words and phrases. It’s a great resource and helpful read for many.

Third, we also need to think respectfully about disability etiquette and how ideas play out in different parts of the disability community. One should presume competence about us – all of us! We ask that you respect our bodily autonomy, speak to the person and not their companion/interpreter, ask before you help, be sensitive about physical contact/equipment contact, don’t make assumptions about capacity, listen to us, don’t assume you know better and if you are in doubt about what to do, ask! Writer Andrew Purlang sums up his disability etiquette request as follows:

  • Don’t be afraid to notice, mention, or ask about a person’s disability when it’s relevant — but don’t go out of your way!
  • Offer to help, but make sure to listen to their response, respect their answer, & follow their directions
  • Don’t tell a disabled person about how they should think about or talk about their own disability
  • Don’t give unsolicited medical, emotional, or practical advice
  • Don’t make a disabled person responsible for managing your feelings about their disability, or for your education on disability issues
  • If you make a mistake, just say you’re sorry and move on. Don’t try to argue that you were right all along.

Now What?

Taken together, these steps, learning disability culture, and examining our own attitudes about disability, go a long way towards the development of disability cultural competence. But none of it will do any good if we are not fighting for disability access and disability inclusion, which are central issues for the disability community. Many people think that issues of access were solved by the passage of the Americans with Disabilities Act of 1990. But the implementation of that law is fraught and embattled, and there is lots of work to be done on the access front. Take a look at these simple guides below. They will go a long way in helping to engage the disability community and making us feel welcome! Above all, remember our movement’s rallying cry, “nothing about us, without us!”

Website Accessibility

Accessible Social Media Guide

Meeting Accessibility

Webinar Accessibility

Public Event Accessibility

Unpacking the Historical Relationship of Racism and Ableism

A key part of anti-racist social work practice is engaging in the art of reflection as we consider the person in the environment. This also involves being aware of the larger social context in which we live and practice. The social context can, for some people, include experiences of racism and ableism. Recently, I wrote about the symbiotic relationship between racism and ableism and why social workers should care about it. Now, I want to take a step back and look at the historical context that leads us to where we are today with the relationship for disabled people of color. Through the consideration of history, we can understand how to better move forward with integrity as anti-racist social work practitioners.

As the poet Maya Angelou said “History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again.” So what are the historical roots of this relationship between racism and ableism? Let’s explore.

Historical Roots of Ableism and Racism

We began to see the interaction between ableism and racism way back in our nation’s history. Let’s look at four examples to make this relationship clear. During slavery times, slaveowners conjured up the idea of drapetomania, the alleged psychosis that was experienced by runaway slaves which in retrospect was emblematic of the interaction of ableism and racism. This is an example of how race is pathologized to create racism. In other words, people of color were treated in specific oppressive ways in order to create barriers and conditions that resulted in the origination of disability categories. In reflecting on drapetomania, Isabella Kres-Nash points out that “the concept of disability has been used to justify discrimination against other groups by attributing disability to them.” Of drapetomania specifically, Kres-Nash says this is an example of a “disability being created by people in power in order to preserve social order” all of which occurred in a racialized context during slavery.

Moving into the 19th century, we can point to the popularity of phrenology, a pseudoscientific technique originally developed in the late 1700s which purports to determine an individual’s character and abilities (and therefore, alleged superiority). This could be deduced from the size and shape of various bumps on a person’s head. Phrenology, among other things, was used to justify the practice of slavery, as was depicted in the film Django, Unchained. Although this pseudoscience has long been discredited, this technique is considered a precursor to modern neuropsychology and rears its ugly head once in a while in current-day conversations about the use of technology and facial recognition (which is known to be much less accurate for people of color).

Scientific Racism

If we look to more recent times, such as the turn of the 20th century, we can see connections between racism and the ableist Eugenics movement which sought to breed a perfect human race through a form of “scientific racism.” This movement often targeted what were known as “feebleminded” people (now known as intellectually and developmentally disabled people), among others, for sterilization, many of whom were people of color. In his discussion on the treatment of African American and Black “feebleminded” people, historian Gregory Dorr says “African Americans had become the targets of extra-institutional and extra-legal sterilizations, reflective of a more general southern racist view that it was necessary to further protect the white race itself from black folks.” Thus, scientific racism is a prime example of the relationship between racism and ableism.

An Unusual Island in Maine

In the early 1900s, what transpired with the inhabitants of Malaga Island in Maine is also emblematic of the relationship between racism and ableism. This small coastal island was a multiracial fishing community originally founded by an ex-slave. While inter-racial marriage was illegal, the community apparently allowed people to live and let live in this regard. It is said that many of the inhabitants of the island were “feebleminded” or intellectually and developmentally disabled, as we would now say. Whether this is accurate is unknown. As the Eugenics movement gained popularity and as the value of Maine’s coastal islands became more clear as potential tourist destinations, state government officials issued an eviction order to all of the Malaga residents – of all races and ethnicities. All residents who had no place to go were to be placed in the Maine School for the Feebleminded, where some were eventually sterilized and lived out the rest of their lives. The price of miscegenation was banishment from a happy community due in large part to ableism and racism.

An Inextricable Link

These four historical lessons give us some important context for what we may see in social work practice today. So, to put it all together, when we look at how structural racism works, we see the ways in which it has pathologized Black and Brown bodies for the purpose of keeping the White status quo in place. We can see how a society that benefits from structural racism is simultaneously responsible for facilitating environments that promote the development or highlighting of disability. These historical situations set the foundations for present day scenarios in which racism and ableism interact regularly – in our criminal justice system, in our education system, in our health care system, in our child welfare system and beyond.

Action Steps

How can you learn from this history and move on in a positive direction? Your job is to reflect on the ways in which the past plays out in the present day, and to identify the ways in which you can disrupt the powerful relationship between ableism and racism in your social work practice. Here are five steps you can consider taking today as an equity-minded social work practitioner:

  1. Become aware of all of your client’s social identities, think about disability as an identity, not just race.
  2. Use data to identify inequitable processes and outcomes based on both race and disability.
  3. Reflect on the differential consequences of social work practices on people and communities based on race and disability.
  4. Exercise agency to produce equity across racial and disability groups.
  5. View the practice context as a potentially oppressive and marginalizing space and self-monitor interactions with clients/patients/constituents of different racial and disability social identities.

Unlearning Ableism, a Social Worker’s Duty

Becoming a social worker is never how I expected my career path to go. I always admired what they did but never believed myself capable of doing it. Now that I am in my graduate program for social work, the pieces are all falling into place. Finally, I found a community that encompassed everything that I was passionate about, and the best part is I could do it as a career. Here, in my social work program, is where I was first introduced to the disability community properly. I say properly because it was here that I understood I needed to unlearn so many things that I hadn’t realized were downright insulting. And I’m not alone with this issue; ableism is common everywhere, sometimes even from those with good intentions.

My Experience

My parents always were great educators. They breezed through explaining tough topics that most parents tend to shy away from teaching their kids. I entered school with an open mind, and I remember myself being overall judgment-free. If only it was that easy. I grew up in a wealthy, upper-middle-class town with a majority White population. I don’t remember being in school with many disabled students, and I am realizing now this is because they were segregated from the rest of the classrooms or their parents had transferred them to other schools that fit their needs better than my public elementary school. Here comes the ableism. Knowing what I know now, I would like to go back in time and yell at myself for participating in these things.

My largest memory of being ableist was participating as a teacher’s assistant in the downstairs, special education room. I was 15 and had good intentions of helping. One student, in particular, that I worked with was non-verbal and communicated through either note-cards with phrases or via a series of grunts for yes and no. I remember feeling a lot of pity for him. The thought of not being able to communicate was terrible to me. I also remember them having few expectations for him. The entire day was mostly life skills teaching. Every small action was met with high praise. I know now that my expectations should have been higher, and my praise emphasized his internalized ableism of having few skills. No one thought he was capable of using a communication device, including me. I just followed the leads of the adults. They didn’t push him, so I didn’t push him. It never crossed my mind to do anything else.

My participation in this classroom was harmful, and it changed the way I thought about the disability community in a negative way. I left the classroom thinking that many disabled individuals could not live independently. That they were incapable of being unsupervised. It made me believe it was ok to infantilize these students. That they should have been praised for every small task they completed, even though many of them were fully capable of doing much more. Why did my attitude shift to pity?

How I Changed

To this day, I still catch myself participating in ableism, but I catch myself a lot faster and try to correct my actions. When working with disabled students now, as an adult, I make sure to push them to participate, practice dignity of risk, and encourage them  to see what they are capable of. I speak openly about their disabilities and practice educating them on what they need to know. I try to send messages of positivity and correct the internalized ableism they feel about themselves. I have come a long way from that girl in the classroom in the basement, but I still have a long way to go.

A Lesson for Social Workers

The idea of ableism is a difficult topic for many. Admitting you participate in it can be a tough pill to swallow, especially in the field of social work. Social workers are supposed to be the “good guys”, and ableism can clash with that idea. It is important for social workers, and those embarking on their journey into the field to remember that we all grew up in an ableist society. We cannot help the lens in which we were raised in, but we can grow our thinking beyond it. The disabled community is already playing on uneven ground due to our ableist society; they don’t need social workers to continue to perpetuate this thinking. Good practice starts within us, and by continuing to be an ableist the social work profession will continue to be poisoned. One of the largest ways that social workers can be good allies to the disabled community is by reflecting on their own ableism to better support the community.

Recognizing Ableism’s Link to Racism

These days, many social workers are pretty clear that anti-racism is something they need to consistently work on in their practice, but when it comes to ableism, well, that’s something else altogether. Let’s start with a quick definition of ableism to build our disability competence a bit. Disability activists Talila Lewis and Dustin Gibson frame ableism as “a system that places value on people’s bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence, and productivity.” But seriously, ableism, you may say…what has that got to do with racism? Why are we even talking about this?

It turns out, ableism and racism are related, and quite strongly. In fact, Dr. Ibram X. Kendi himself, host of the podcast Be antiracist and author of the book How to be an antiracist, says “It is pretty apparent to me that one cannot be anti-racist while still being ableist…I think for many people who are indeed striving to be anti-racist they may not realize the ways in which they’re still being prevented from moving along on this journey due to their unacknowledged or unrecognized ableism, or the ways in which they’re in denial.”

Social Work, Race, & Disability

As we begin to break this down, as a disabled woman, I’d like for our profession to own that social work often forgets to realize the disability community in diversity considerations. And with this, is a failure to see ableism, despite the fact that we, the disability community, comprise 26 percent of the U.S. population – that’s 1 in 4 Americans according to the Centers for Disease Control. And if you consider the racial and ethnic diversity within the disability community (and vice versa if we are being intersectional) then we need to be considering how ableism and racism interact and intersect.

Let’s just start with the basic demographics. A recent study on disability, race and ethnicity tells us that 1 in 4 members of the Black and African American communities have a disability, while 1 in 6 members of the Hispanic/Latinx communities do. In the American Indian and Alaskan Native communities, it is 3 in 10, and among Asian and Pacific Islander communities, it is 1 in 10 and 1 in 6, respectively.

When we start to look at social issues connected to these types of data points, we find out bits of information such as the fact that people of color with disabilities have higher rates of unemployment than do their White counterparts, according to the Bureau of Labor Statistics. Then there are the realities that many school social workers have seen in classrooms nationwide for decades, with disproportionate numbers of students of color being sent into special education. And in the post George Floyd era, we are also more aware of the connection between racism and ableism due to the fact that 50 percent of people killed during encounters with police in a two year period were people of color with disabilities, as the Ruderman Family Foundation documented in their landmark report.

The Impact of the Pandemic

Then we have the COVID-19 pandemic, which has disproportionately impacted communities of color. We know that initial research suggests that about one third of people who had the virus will develop what is called “long COVID” which will now be classified as a disability. According to disability justice activist Rebecca Cokely, that means that we will be adding an estimated ten million people to the disability community who will be covered by the Americans with Disabilities Act of 1990. This law provides workplace and other protections for disabled people – although the implementation and enforcement of this law is far from perfect, and thus the cycle of ableism and racism starts again given the overrepresentation of people of color in this population.

These are just a few current-day snippets that tell us we need to be paying attention to both ableism, racism and the ways in which these two forms of oppression are related to one another. Ableism and racism exist in a symbiotic relationship, with each acting as the tool of the other. Being aware of the intersection between racism and ableism is part of how social workers can begin to disrupt this reality in their practice and in their larger communities. So, what can you do to be more aware of racism and ableism in your social work practice? You can start by paying attention to the disability side of the equation that often gets forgotten! Here are some activities for you to consider as you engage in this vital social justice work:

  1. Start by exploring your able-bodied privilege. Read the following prompts on able-bodied privilege from the Autistic Hoya blog, written by Autistic disability justice activist and lawyer Lydia X. Z. Brown. Which items were most salient to you? You may consider the list items from a personal and/or a professional perspective, focusing on how you may or may not experience these issues yourself or how you may have encountered these issues as a social worker. How do race and ethnicity factor into able-bodied privilege?
  2. Continue by building your personal disability awareness. What values and/or ideas do you hold that may unconsciously perpetuate ableism? Where did you pick up these values? How does this play out with your disabled clients of color? Take time to think these questions out, and be mindful of them as you move forward.
  3. Just as it is super important to acknowledge our potential for racism as people raised in a racist society, so too is it important to acknowledge the ways we may have engaged in the use of ableist language or expression of ableist attitudes. How have you or your agency/organization/company unconsciously or consciously used ableist language, or expressed ableist attitudes? How do race and ethnicity factor in here? How can you change things moving forward?

This article has demonstrated the connections between disability and race, but social work has often failed to see disability. How can you look at the causes you are already involved in through a disability framework that is also attentive to race and ethnicity? How can you lift up the disability perspective and promote disability empowerment while being anti-racist?

Statement from the Texas Chapter of the National Association of Social Workers Regarding the Changes to the Social Work Code of Conduct

We the board of the Texas Chapter of the National Association of Social Workers received the stunning news about the change to the Texas Social Work Code of Conduct that “slipped in” at the last minute at a request of Governor Greg Abbott. This bypassed the usual 30-day requirement for public comment and bypassed usual approval procedures because it was voted on and approved at a joint meeting of the Texas State Board of Social Worker Examiners (TSBSWE) and the Behavioral Health Executive Council (BHEC, TSBSWE’s governing body).

The governor personally strong-armed the board into approving this change, without opportunity for public comment. His explanation was that elsewhere in the Texas Code and legislation, this language is not used and therefore should be removed from the Social Work Code to align it better with the “usual” language. In other words, our state does not recognize sexual orientation or gender identity as protected classes (as we do race, religion, etc.) and therefore Texas social workers should not either.  We are both horrified and speechless at the removal of the protections against discrimination for disability, sexual orientation, and gender identity, and gender expression from the Social Work Code of Conduct. This move appears to be an exertion of the governor’s power in both a professional and a deeply personal way.

Standing precedent is that political agents are not to dictate the Social Work Code of Conduct; this responsibility belongs to the TSBSWE.  The state Code is also presented as a minimum and is not expected to be inclusive for every profession, area of practice, and population – governing boards are appointed to make rules, as deemed necessary and appropriate for their respective professions. The law should never sanction unethical practices and in fact, should do just the opposite.

As we are called by our National Code of Ethics to both, not discriminate or oppress any group or person, for any reason, and to speak out against systems that seek to do just this, we refuse to accept such dehumanization. The rule to protect the access of service for persons of all sexual orientations and gender expressions was added into our Code in 2012, without objection from the governor’s office.  This language MUST be restored immediately. We must make sure that our VOTES are for representatives who will help us protect access to service for the most vulnerable. This is just the beginning.

NASW is mobilizing action steps to fight this. Members can call their state representatives and the governor’s office right now to oppose, but we will need something collective to beat back this oppressive action. Religious freedom must never come at the expense of serving the most vulnerable in our communities.  Social workers must stand against removing any anti-discrimination protections from the Texas Social Work Code of Conduct.

To see a full list of the NASW/TX board members please visit https://www.naswtx.org/page/Board_and_Staff. To receive the latest updates on the subject visit our website, follow us on Facebook and Twitter (NASW/TX and NASW/TX Advocacy.

Black Disabled Lives Matter and How Social Workers Need to Address Structural Ableism

Conversations about police violence are happening all over the world from the killing of Mr. George Floyd, Breonna Taylor, Jacob Black and so many other Black, Indigenous, and People of Color (BIPoC). America is at an inflection point where we are being forced to examine our ugly stain of racism which permeates through every American system and infrastructure.

Difficult conversations on structural racism, police brutality, and inequality are finally be held where its a shared reality. And I want to add a disability thread to that conversation, but first…

Several years prior to 2020, Professor Kimberlé Crenshaw added a different thread to the conversation about BIPoC deaths at the hands of police by talking about gender and all of the women who have died due to police violence, but many of those women names are not known. We got to know the #sayhername movement where people began to think intersectionally about race and gender even if the mainstream news media didn’t report much about the deaths of BIPoC women killed by police.

But only recently have we learned that 30-50% of the BIPoC people who have died at the hands of police in this country over a three year period had something else in common, they had a disability. This fact was unearthed by the Ruderman Family Foundation in a white paper that examined media coverage of such cases (PDF file here). It was necessary to study this phenomenon this way as there is no legal requirement for police to track disability data related to arrests or deaths. Did you know that Sandra Bland had a disability? Freddie Gray? Elijah McClain? And so many more…

In studying media reporting, the Foundation noted that disability was either not mentioned, listed as a non-contextualized attribute, used to evoke sympathy for the victim or to blame the victim. In rare cases, it allowed for discussion of the intersecting forces leading to lethal use of force situations. The report concludes states, “When disabled Americans get killed and their stories are lost or segregated from each other in the media, we miss an opportunity to learn from tragedies, identify patterns, and push for necessary reforms.”

Although disabled people make up 1/3 of all households in the United States, which is approximately 61 million people or about 25% of the U.S. population, it still feels as though we are so often *unseen* and *unremembered* in social work circles or any circles as if our identity is an afterthought.

Social workers need to begin to see with a disability lens, to remember disability as an identity. In working with disabled people, social workers need to think about the ways they can prevent the deaths of disabled people at the hands of police – and especially BIPoC disabled people. Disability justice advocate Haben Girma has been out front on this with respect to individual interactions with the police, but let’s think about this more structurally.

Here are a few questions that can guide your work – notice that they move beyond the usual band-aid “train the police to work with disabled folks” response that we usually get and move towards the goal of structural reform! Just as we need to think about structural racism in confronting police violence, so too do we need to think about structural ableism in police work.

  • How can we raise disability culture awareness *throughout* our local police precincts?
  • Are there ways we can rid those precincts of structural ableism such as through the identification and elimination of ableist thinking, tendencies and practices?
  • Are there strategic partnerships we can facilitate that can bridge disability justice advocates with law enforcement and social service partners toward this effort?
  • Are there alternative conflict and dispute resolution systems that we can fund in order to avoid police involvement in “hot situations?”

Are you willing to step up for disability justice in your social work world? 

New White Paper Provides Triage Blueprint for COVID-19 Pandemic to Protect People with Disabilities

The Ruderman Family Foundation, a leading disability rights organization, published a new white paper which offers recommendations to help health policymakers make decisions to ensure the lives of people with disabilities are not secondary amid the collective public health goal to save the most lives during the COVID-19 pandemic.

Fair Resource Allocation During the COVID-19 Pandemic” calls for the implementation of triage guidelines in a way that is as objective as possible. The white paper recommends appointing a critical care physician as a triage officer, as well as a nurse with critical care experience and a hospital administrator, who would document the process and serve as a bridge to the organization’s management team. This team is charged with making decisions about who will be prioritized to receive critical care based on clinical data for each patient, aiming to use resources in a way that maximizes patient survival.

“It is vital during the surge that will hit our hospitals at different times during the coronavirus pandemic, that we don’t as a matter of policy discount the lives of people with disabilities and other compromised populations,” said Jay Ruderman, President of the Ruderman Family Foundation. “A life is a life and while medical personnel may need to make very difficult decisions during triage situations, our society should not put a higher value on able-bodied patients over others. By doing so we will devalue ourselves as a society based on equal rights for all, but by caring for all regardless of preconceived notions of the value of the lives of people with compromised situations we will elevate ourselves as a society.”

Authored by Dr. Dominic Sisti, Director of the Scattergood Program for the Applied Ethics of Behavioral Health Care at the University of Pennsylvania; Dr. Joseph Stramondo, Assistant Professor of Philosophy at San Diego State University; and Dr. Hanna Shaul Bar Nissim, of the Ruderman Family Foundation and Visiting Scholar at Brandeis University — the white paper comes at a time when a number of states have come under scrutiny for their triage guidelines regarding people with disabilities and how they would be deemed secondary for life-saving treatment.

The study also analyzes the landscape surrounding people with disabilities and disaster medicine; attending to patients with disabilities who have medical conditions other than COVID-19; and visitation in hospitals and residential facilities.

As part of the triage team, the white paper recommends including a representative from a disability advocacy organization, increasing public trust in the decisions that are made. “Avoiding mistrust must be a central concern of triage efforts so that patients are not hesitant to seek treatment. To that end, transparency in exactly what the triage criteria are is also essential. Finally, it may even be worth building in (and publicly acknowledging) some kind of appeal and oversight process that reviews triage decisions to make sure that the teams are accurately implementing whatever protocol is being deployed,” the white paper states.

The Ruderman Family Foundation’s response to the bioethical issues surrounding COVID-19 has been informed by the organization’s existing partnership with Boston-based Massachusetts General Hospital (MGH). Earlier this month, the Foundation announced a $100,000 grant for mental health services to medical professionals at MGH. Since 2013, the Foundation has worked to build capacity across the hospital to effectively address the healthcare needs of individuals with autism and other neurodevelopmental disorders across their lifespan.

The full white paper can be accessed here: https://rudermanfoundation.org/white_papers/fair-resource-allocation-during-the-covid-19-pandemic/

How Reflecting on My Choice to do Prenatal Tests Made Me a Better Social Worker

My professor asked me to reflect on the ways in which I have engaged in ableism as a social work student. While I could not think of a professional instance, I was able to reflect back on my personal life about a time that I did engage in ableism. Recently, I gave birth to my son, my first child, back in January of this year.

Toward the beginning of my pregnancy, I believe around week 12, the obstetrician sat me down and started to discuss optional screenings that they could do that would determine whether the baby had any disabilities, such as Down Syndrome. As soon as she started explaining all the different tests, I knew I was going to choose to have at least one done. In the end, I chose one of the least invasive but more accurate tests.

Whenever someone asked why I was getting the test (as I wasn’t high risk, and am on the younger side), I would tell them I just wanted to be able to be prepared. I told them that I wanted to be able to prepare my house or to get necessary equipment or other things that might be needed by my child.

However, leading up to the test I began to have dreams about getting ‘bad news’ from the doctor. I also had dreams in which my doctor told me that there was ‘something wrong’ with my baby. I started to realize that it wasn’t my house that I would have to prepare, it would have to be myself!

Slowly, I came to the understanding that if I got the news that my child had a disability, I would need some time to process and accept that news. I think that I struggled with the belief that my child would have a ‘lesser life’ if they were born with a disability. In addition, I think that a part of my process would have been going through the grieving process as I would have been grieving the ‘perfect child’ that I imagine many pregnant women imagine when they first find out they are pregnant.

In my readings for my course on social work practice with people with disabilities, I learned how genetic testing connects to the medical model of disability. As my textbook discussed, the testing and the possible results were only presented to me by my medical team through a medical model lens, versus a social model of disability lens.

My medical team informed me of the genetic reasoning behind any of the possible disabilities that could be discovered but did not include any information regarding what my child’s life would be like if the test was positive. It would have been beneficial to hear about the lives of people living with some of the disabilities.

This could have possibly calmed my nerves as well as avoided my ableist thinking. My hope is that for patients who do have a positive test, their medical team can learn to sit down with them and go into further detail about what a child’s life will and can look like. I think this could help a parent-to-be process that news in a not-so-negative way. I believe that a discussion like this could help patients understand that the only options are not abortion or a child with a ‘lesser life.’

As a social work professional, it is important to always reflect on and examine our own ableism. In our society, we have been witness to countless ableist thoughts and beliefs throughout our lives. These beliefs become the standard way of thinking and affect our interactions with people with disabilities.

Therefore, it is essential for a social worker to reflect on their own ableist thoughts and practices in order to be able to change their way of thinking – and practicing! Once the social worker is able to do this work, their practice with people with disabilities has the potential to be so much more valuable.

On Stacking Books in the Library, and Undoing My Own Ableism

My first job right out of high school was working in a public library. I was one of three library pages who would put books away in order to maintain the bookshelves. A majority of the library staff watched me grow up in that building, and I was given my first opportunity at an internship the year before. I was very bonded to the staff and to the building itself. Working there reminded me a great deal of my childhood.

“Violet” was one of the book pages I worked alongside. For as long as I can remember, she had always worked at the library, it was almost as if she came with the building. Violet retired the year the building was given a grant to be rebuilt, which I always found to be appropriate timing. As a child, I could always count on Violet to be in the fiction section of the library.

Walking in, I knew I would find her pursing her lips and mumbling to herself while she put the cart of books away. Typically, she would stop me, and let me know I looked just like my mother and would then ask after her, right before complimenting me for the season I reminded her of, Autumn. By the time I began to work at the library, Violet was an elderly woman. She would come into the library every morning at 8:45 a.m. with fifteen minutes to spare, so she could sit on the ratty old orange couch in the staff lounge for ten minutes and then spend the last five minutes greeting staff as they came in before getting to her book cart.

Violet was meticulous at keeping time and budgeted herself to shelving two carts for the three hours she would work every day. Some days she was overly ambitious and was able to complete two and a half carts, but that was rare. Once she finished her shift she would grab her things from the staff lounge and go home. Later I learned Violet had a schedule she followed daily, consisting of breakfast at the Tea Cup Café, a walk to work, completion of her shift and then a return to the Tea Cup Café before going home. She lived alone and had a visiting nurse who would come to her home twice a day, once in the morning and once in the afternoon.

Once I had gotten really efficient at keeping my shelves well maintained, I would go down and help Violet with her books. At this point, I was shelving three to four carts an hour. Many times, I would put Violet’s books in alphabetical order for her on the cart so all she had to do was shelve while I walked around after her and fixed her shelves to make them look as “fronted and faced” as mine.

After several weeks of doing this, I was taken aside by my supervisor and asked that I not help Violet because Violet was capable of doing her own work and she took the time she did because she had schizophrenia. I was not aware of this, and always felt I was doing what was “right” because Violet was elderly and honestly, seemed to me to present as not very aware of her surroundings. It wasn’t until I was told of Violet having a diagnosis of schizophrenia that I realized why she presented the way she did.

I learned later on that she had been institutionalized for many years as a young woman until her brother and sister were old enough to discharge her from the facility she was in. Violet came from a time where health practitioners believed it was best to lock away persons with disabilities and forget them. This process is consistent with the manifestation of oppression through what is referred to by disability advocates as ‘containment.’ Society would rather hide Violet away than have her become a productive member of society or teach her skills because her life was less valuable than that of a person without a disability.

Violet and I never discussed her past or her diagnoses for the four years she and I worked together. After learning of Violet’s diagnosis, I realized I had been practicing ableism by doing her work for her and immediately stopped. I was not allowing Violet to do the work she was capable of because I assumed she couldn’t do it. Following this incident, I learned to ask before assisting her because I wanted to ensure I was respecting her ability to work at her own pace and do what she had been doing for thirty plus years.

The irony of it all is my brother has schizophrenia and it wasn’t until I met Violet. that I realized the importance and effectiveness of a routine but also, knowing Violate gave me hope that my brother might someday find himself in a similar position where he could function independently from my parent’s care.

The last year I worked at the library, Violet could no longer live independently due to needing around the clock assistance and eventually moved to a nursing home where she passed away some years ago. Every so often I visit the library and think of the woman who taught me about resiliency but also gave me a perspective that I keep with me always.

Let People Who are Non-Verbal Communicate in their Own Way: A Social Work Challenge

While working at a disability group home agency, I came to know“ Jane,” a person with Rett Syndrome. Jane was non-verbal and was unable to walk independently. She used a specialized walker to move around. In addition, she developed her own sign language in order to communicate. During the day, Jane would attend a day program which gave all nonverbal clients computers that had the “Picture Exchange Communication System (PECS)” system on it.

Jane was required to use it at the day program and was also encouraged to continue using it at the group home. Yet, when Jane would take home the computer, she would leave it in her bedroom. Jane did this because she didn’t like it and was comfortable with her own form of communication. The day program became insistent on Jane using the computer at home, so the director insisted Jane use the form of communication provided to her. Jane refused to use the computer and threw it across the room because she was so upset about being asked to do so. The day program still required Jane to use the computer while at the day program, however, once she was in her home she didn’t use it and the staff did not force her to do so.

As a social worker, I would first ask whether Jane wanted to use the PECS system. When disability studies scholar Tom Shakespeare was discussing the social model of disability which infers society is disabling versus the person who is disabled. He argued the idea of this practice is to make society adapt to people with disabilities which would include allowing for people’s own communication choice to be honored or it could include providing accommodations like the PECS system for non-verbal clients. One of the barriers of the social model of disability is trying to make accommodations for people with disabilities without choice.

The PECS system might work well for one client who is non-verbal, but it did not suit Jane and she did not want to use it. Shakespeare described limitations with the social model-informed practice as assuming there could be a “utopia” for people with disabilities as there would be no barriers. People with disabilities do not all function or adapt the same way so it is unrealistic to be able to accommodate everyone and it is insulting to force accommodations on people with disabilities if they do not want to utilize that specific accommodation.

If Jane was given the option to use or not use the PECS system, it would be realizing the social model-informed practice because society is making the change and not expecting her to change. By forcing the PECS system on Jane, it is reverting back to the medical model practice because the program is making Jane adjust instead of learning Jane’s sign language.

Jane also used a specialized walker. I would engage in medical model-informed practice (where the focus is on the impairment that leads to disability) by acknowledging it was Jane’s body part that was impaired, and therefore disabled her. This is another limitation of the social model-informed practice.

As social model-informed practice is so focused on society being the barrier that it does not always acknowledge that a person’s body can also be the barrier. The medical model-informed practice is what helped Jane receive the specialized walker because Jane’s body was the barrier and she wanted to walk as independently as she could. The social model-informed practice can also be used by ensuring there are ramps for Jane so she can have easy accessibility.

From the macro level of social work, I believe we are on the right track with the social-model informed practice. However, this model is not complex enough to include everyone. Intersectionality does not seem to be taken into consideration with this model, which is a complicating and limiting factor.

A strong model needs to be developed to acknowledge the complexities of people and their disabilities. A person’s environment, gender, race and other social identities need to be considered when developing models which was not the case since the group of activists who rallied for this model were white heterosexual men.

The first step to be taken by every social worker should be to ask the person with the disability “what can be done to support you?” or “what do you believe needs to be changed so you do not continue to feel oppressed or feel like your voice is not being heard?”

Language Is Power: Two Things You Need to Know for Practice with Disabled People

Did you know that over one fifth of the United States population has an impairment that leads to a disability? Given this, social workers are bound to engage in practice with disabled people across many service sectors – a reality which leads to the need for disability competence – and that includes competence around language choices.

Whether you are working in child welfare, employee assistance programs, criminal justice or end-of-life care, you will need some guidance on how to approach your work with disabled people in a respectful manner. Here are two helpful things you need to know to be a better social worker in partnership with disabled people.

First, it is always ideal to look to your professional association for guidance. In the case of practice with the disability community, the National Association of Social Workers not only has a disability policy statement, but they also have made a major change to their Code of Ethics (CoE).

The CoE is the guidepost in our profession, and in setting out standards for practice, it names a series of diversity factors, including, for example, race, ethnicity and national origin. Until the most recent revision of the CoE however, disability was the only diversity factor that was not framed in a positive light.

To rectify this, the current version of the CoE replaces the term “disability” with “ability” in order to present a more strength-based framework that can counteract dominant society norms that belie the capacities of disabled people. Specifically, the CoE states that social workers should “obtain education and seek to understand the nature of social diversity and oppression” with respect to people with varying abilities.

While this may be a turn off to people that embrace identity-first language (i.e. disabled people vs. people with disabilities), as a disabled person, I believe that this simple change is helpful, and does not fall into the camp of widely-rejected, outdated and offensive terms such as “differently abled,” “handicapped,” or “special needs” that are often used by well-intentioned people. Check out, for example, Lydia X. Z. Brown’s glossary of ableist phrases.

Second, it is also always a best practice to learn more about the language preferences from our clients’ cultural communities. Lately, not a day goes by on my Twitter feed when I don’t see commentary from disabled people about their preferences for either person-first language or identity-first language.

Check out the #identityfirst hashtag, for example. For many years, social workers were encouraged to use person-first language as a way of showing respect, as opposed to labeling someone as “a schizophrenic,” or “autistic,” for example, both of which were felt to have negative connotations at the time.

Proponents of identity-first language have reclaimed such terms by embracing their disability identity first. For example, a well-known disability rights leader prefers to be called Autistic, and another advocate prefers to be referred to as mad (signifying mental illness).

For social workers new to practice with disabled people, an ideal approach could involve using approaches interchangeably until it is clear what type of language is preferred by the client in question. Remember, language is a key component to client engagement, and, therefore, language is power.

Regardless of whether you are identifying populations with varying abilities, or honoring your clients’ wishes for person-first or identity-first language, the most important thing is to see people for who they are, not for the stereotypes or assumptions that often precede them.

How Wearing High Heels During my Commute Helped Me to Be a Better Social Worker

Ableism is the idea that people with disabilities are not typical and are, therefore, inferior. Upon reflection, I have engaged in ableism against people with physical disabilities while on public transportation. Typically, I take public transportation during the peak hours of commuting to work between 7 a.m. and 9 a.m. and leaving work between 4p.m. and 6p.m.

There are signs on the bus indicating that when a person with a disability enters the bus they are to be given seats in the front, and people with wheelchairs or motorized chairs, walkers, canes and women with baby strollers occupy those seats. However when the bus is crowded during those peak times there is somewhat of an ‘all bets are off approach’ to seating and people tend to disregard those signs.

My example of demonstrating ableism involves a woman with a motorized chair who entered the bus one day. When she boarded the bus, everyone sitting in the front had to move towards the back to make space for her to enter and turn her chair towards the front. On this particular day, I’d had a very bad interaction with a client at work. Mentally, I was not in a good state of mind as a result.

I also had on heels which made my feet hurt from standing. Seats on either the left or the right could be used for a person with a disability, however, the woman entered the bus and immediately looked towards the right where I was sitting. I knew this meant that I, along with another woman, should stand up and make room for her. The bus was very crowded and therefore moving towards the back felt like a nearly impossible task in order to make space for the woman in the motorized chair.

Without realizing it at the time, I was perpetuating a system of oppression onto the woman with a disability. Disability studies scholar Tom Shakespeare states that society is a disabling factor in the current social model of disability. He argues that it promotes the social oppression and exclusion of people with impairments – as opposed to a focus on the impairment itself as the problem. Looking back, I recall that I was upset that the woman with the motorized chair had turned to my side of the bus and I had had to get up. This response perpetuates a cycle of oppression because I used her disability as a source of rationalizing why she should be excluded from the bus.

Although I did not say anything verbally to the woman in the motorized chair, my face and body language gave a very descriptive picture of how angry I was that I had to move. The other women that were sitting next to me were verbal with their anger and made comments such as “she should have waited for the next bus, as there’s no space” and “why do we have to move for her?” In the moment I agreed with those women and their outbursts. I was upset, tired, and in pain because of my heels. My only thoughts were selfish thoughts about wanting to get home so that I could get comfortable.

In retrospect, our attitudes were ableist because we ostracized the woman with a disability and trying to exclude her from riding the bus as everyone else was doing. I likened these feelings to feelings of the ‘survival of the fittest’; mentality that was prevalent during Darwin’s lifetime. As a recent PBS documentary discusses, people with disabilities were viewed as ‘undesirable’ and every effort was made to treat them as outsiders in society rather than practice inclusivity.

At that time, people with disabilities were not viewed as fit to be amongst abled-bodied people. As it relates back to the bus, the signs clearly acknowledged the seats were for persons with disabilities or the elderly. However, due to our own selfish reasoning and justification, we did not feel it was enough to warrant giving a seat to the woman in the motorized chair.

It is important for people to recognize their ableist nature so when situations similar to the one discussed arise they can approach it with respect and empathy rather than disdain for the person with a disability.

This essay was written by an anonymous M.S.W. Candidate at Salem State University’s School of Social Work in Salem, Massachusetts.  The author may be reached on Twitter at @disabilitysw or via email at disabilitysocialwork@gmail.com.  This author’s blog posts are published at www.disabilitysocialwork.blog.

Moving Beyond “Fixing” People: Social Work Practice with People with Disabilities

Working on a boarding high-school campus, I have the opportunity to be exposed to different students. During my first year, one student, in particular, stood out. J.M. was a breakout basketball star and had dreams of going to the N.B.A.

Unfortunately, in his junior year, he was in a terrible car accident and as a result was paralyzed from the waist down. Everyone on campus was affected by his accident because J.M. was such a bright presence on campus and when he came back, he was a different person. He was less interactive on campus and lost his love for basketball.

The adults who were working with him every day were so fixated on the medical model, they wanted to “fix” him as much as they could so he could be ‘normal’ again. They suggested to his mom to take him to the best doctors who specialize helping people who are paraplegic learn to walk through virtual reality. They were not focused on his direct needs because they did not ask him, and that was detrimental to his recovery.

In using the social-model informed practice, the adults working with J.M. should have discussed with him how he saw his recovery going. By placing the focus on him rather than his disability, J.M.’s confidence in recovering could have been more positive than negative. Indeed, disability studies scholar Tom Shakespeare discusses the importance of focusing on the individual and not the impairment in order to create a confident space.

One of the limits in the social model approach, Shakespeare says, is the idea that individuals with disabilities should disregard their impairments. More specifically, the social model disavows both individual and medical approaches so much that it actually risks the suggestion that impairments are not the problem!

The medical model is helpful when we are utilizing action practices that are suggested by the person with the disability and not the people around them who are looking at it like a problem that needs to be corrected. As social workers, it will only benefit the clients we are working with if we are their advocates and find a balance between the medical model and the social model.

This essay was originally prepared for Dr. Elspeth Slayter’s social work practice with people with disabilities course at Salem State University’s School of Social Work  Graduate students were asked to reflect on the ways in which they approach their work with clients with disabilities. Specifically, they were asked to reflect on what aspects of their practice were “under” the medical model of disability and which were “under” the social model of disability.

Students were first introduced to the medical model of disability, in which the person’s impairment was the focus. Then, students were introduced to the social model of disability, in which society is seen as the disabling factor as opposed to the part of the person with the impairment. In order to begin to re-visualize what social work practice with a client with a disability would look like, students were asked to answer the following question:

“How can social workers approach the needs of people with disabilities without perpetuating the negative impacts associated with the medical model of disability? Provide a case example and then describe how you could/do/would engage in medical model-informed practice and social model-informed practice with that client.”

How Disability Culture Can Inform Mentoring Girls with Disabilities

Photo Credit: Big Sister Association

I am a social work intern at the Big Sister Association of Boston. This is a unique organization, as it is the only gender-specific branch of Big Brother Big Sister in the United States. This is also an important fact as research suggests that girls experience mentoring relationships differently than boys do.

Additionally, research suggests that girls have gender-specific needs that can best be addressed by gender-sensitive support. One of the values of the Big Sister Association of Boston is cultural responsiveness, as the agency finds it important to learn about and embrace cultural differences – and this is where Disability culture comes in.

Disability social workers Romel Mackelprang and Richard Salsgiver discuss the emergence of Disability culture and assert that it is not only an identity but a ‘way of life,’ similar to race or ethnicity. I feel that it is critical that when conceptualizing how to be cultural responsive that Big Sister mentors keep Disability in mind as a type of culture. Recognizing Disability culture is important because we work with Little Sisters ages seven through twenty, as well as volunteer Big Sisters over the age of eighteen, and any of these girls and women may have a disability.

In addition to being aware of the language and history of Disability culture in order to show respect, we must also understand that there is a community aspect of Disability culture that can have great social benefits for the people we work with. The goal of our mentoring program is to strategically match girls with mentors who have similar interests and experiences as them. Therefore, making an effort to match girls and mentors with disabilities can have the added benefit of sharing an understanding of a common experience and culture, therefore making the match relationship even more impactful.

In their book, Romel Mackelprang and Richard Salsgiver share the story of Carolyn and Marnie, two women who met and “developed a sisterhood formed from shared circumstances….their self-concepts and meanings they ascribed to their disabilities were similar.” Further, the authors note that Carloyn and Marnie had “few or no role models with disabilities, their disabilities were defined as negative, shameful…were isolated from others like themselves.”

The concepts of sisterhood and community are two more of the Big Sister Association of Boston’s values, and increased confidence is an outcome goal held by the program. As the relationship between women can be so powerful, it is important that Big Sister staff recognize this potential and thoughtfully seek to make matches between women and girls who share experiences as people with disabilities.

Big Sister Association of Boston values gender-specific programming, and it is important that this specificity carries over when thinking even further about what it means to not only be a girl, but to the intersection of being a girl with a disability in our society.

One way that Big Sister staff can work on developing knowledge about Disability culture as it relates to girls could be perusing the Gimp Girl website. As a refresher, the Georgetown Health Policy Institute defines cultural competence as “the ability of providers and organizations to effectively deliver health care services that meet the social, cultural, and linguistic needs of patients.”

The Gimp Girl website can be used as a resource for Big Sister staff to assist them in the task of continuously working on their cultural competence by becoming fully informed about the views and needs of girls with disabilities in particular. As a non-disabled person, I have permission to access articles and presentations on the site and join their online public forums. The website also includes links to many blogs written by and for girls with disabilities, which can raise awareness of the most current issues and interests of this particular community.

Tuning into Gimp Girl can help me practice cultural responsiveness by making me aware of the issues and concerns of interest to this population in order to most effectively meet the needs of girls with disabilities in a respectful and accessible way. Realizing that some people might prefer the term ‘gimp’ to the term ‘disabled’ might be important for Big Sister staff to realize vis-à-vis the debate between whether to use person first or disability first language.

The website will also help staff to practice cultural humility by reminding them that girls with disabilities have distinct and individual needs, as they describe what it means to experience the intersection of gender identity and disability. Reading about girls’ varying experiences will encourage Big Sister staff to consistently check their own biases and assumptions as well as maintain their position as learners when interacting with girls.

In addition to increasing any given Big Sister staff members’ knowledge and awareness about Disability culture, staff will also be able to share this website with Little Sisters if they are not familiar with it. Our agency constantly provides Big Sisters with information, resources, and activities they can use when spending time with their ‘Littles,’ and this website could be a great resource.

Big Sisters could explore the website with their Littles to find blogs that their Littles can relate to, or even help Littles join a Support Meeting in the online chat room. I think this resource is something that can benefit all of our staff and the girls and women we serve – and perhaps this will be true for you as well!

Hurricane Irma: Two Things Helping Professionals Need to Know About People with Disabilities

Photo: AP

The state of Florida has called for 17,000 volunteers to help out with the post-Irma recovery process, but there’s one population that are often forgotten in the crush of storm evacuation and disaster recovery efforts, and that is people with disabilities.

Recently, at a social work conference, I was told “disability is not a social work issue,” which is a shocking statement, given that over one-fifth of the United States’ population has a disability according to the Centers for Disease Control. All too often, people with disabilities are left feeling invisible in our society – and as helping professionals, we need to right this wrong. In order to begin to do this work, especially given the impact of Hurricanes Irma and Harvey on our country, here are two things helping professionals need to know about people with disabilities.

Storms such as Irma and Harvey are very likely to have a disproportionate impact on people with disabilities – see Professor Rabia Belt’s commentary on this topic. During Hurricane Katrina and surely many others, it came to light that many people with disabilities were unable to evacuate due to mobility limitations, equipment needs, staffing needs, requirements for service animals or just having a low income.

We know that people with disabilities are much more likely to live in poverty in this country, and this can really take a toll during storm evacuations and disaster recovery. In fact, during Katrina, 155,000 people with disabilities aged 5 and up lived in the cities hardest hit by the storm – and unfortunately, a disproportionate amount of Katrina’s fatalities involved this population. Helping professionals need to see people with disabilities – and seek them out prior to, during and after a storm.

Given these realities, it is important to design disaster preparedness and recovery efforts so that they are accessible to all – including people with disabilities in keeping with the Americans with Disabilities Act. In the disability community, stories about people with mobility limitations, nursing needs, and service animals being refused shelter or assistance are making the rounds. We must do better.

The National Council on Disability wrote an extensive report on the topic of disaster preparedness, and it provides great guidance for disaster planning and recovery efforts – be prepared! There is also specialized guidance on how to create accessible programs and spaces for people with disabilities during and after a devastating storm in a way that promotes self-determination.

People with disabilities do not want to be victims, and helping professionals should support their self-determination during evacuations, sheltering and recovery. Portlight Inclusive Disaster Strategies, an organization based in the southern United States, is the go-to source for assistance with people with disabilities during these storms. Please use their hotline for assistance with your clients with disabilities 1-800-626-4959.

Their motto is drawn from the disability civil rights movement, “nothing about us without us.” As you gear up to provide help before, during and after these storms, keep this motto in mind and let it guide your practice. We can do better for people with disabilities, and we will.

A Teacher’s Response to Charlottesville for Social Workers in Practice with People with Disabilities

Charlottesville Black Cop
Officer patrols in front of a recent KKK rally in Charlottesville, Va. – Jill Mumie

I am currently teaching a course on social work practice with people with disabilities.  The course uses an intersectional lens, acknowledging the fact that people have many intersecting social identities that can result in varying types of privilege and oppression.  As such, I had to provide some venue for my students to address the Charlottesville violence and hate speech.  The following is a discussion prompt I provided for them to respond to, and I thought other social work educators might be interested in seeing this so that they could use it and/or modify it for their own courses.  Feedback welcome!

Discussion prompt: As we are part of a course on social work practice with people with disabilities in the United States of America, I would be remiss not to address the events of this past weekend in Charlottesville, Virginia. As you have already likely gathered, there are important links between the White nationalist/Nazi actions in Virginia, and the work we do as social workers with people with disabilities – who often have intersecting marginalized social identities.

Many of the perspectives held by members of White nationalist/Nazi groups are clearly identifiable as racist, sexist, homophobic, anti-Semitic and even Eugenic in nature.  Therefore, as social workers practicing under our particular Code of Ethics, we need to respond. If you need some quick resources to learn more about the dynamics that led to the Charlottesville rally and violence, you can check out the “Charlottesville Syllabus” at this link.

As disability-aware social workers training to view the world through an intersectional lens, we need to acknowledge and act on what has happened in Charlottesville. That means that we need to engage in discussions – often difficult in nature – with our families, our co-workers and with our clients. Let’s start with our work with clients.

One prominent disability civil rights activist, Rebecca Cokley, has noted that when terrorist incidents like this occur, people with disability count the minutes until ableist claims about the ‘crazy’ person who engaged in terrorist acts roll in. That may be an important place for you to start a conversation with a client with a disability in a week like this one. In this essay, Ms. Cokley points out another important link between disability and trauma.  She calls for the disability community (and disability service providers) to reach out to those whose disabilities came about as a result of trauma, such as the people who were injured and impaired by the car driven by the White nationalist/Nazi from Ohio. Her essay is short, easy to read and compelling and you can find it here.

It is also important to remember, however, that our work is not just direct care work. Remember, the NASW Code of Ethics states that we must fight for social justice, as it is a core value in our profession. We need to do more than discuss these difficult topics amongst ourselves, we also need to take a stand on them. I am fond of the idea that if we are not part of the solution, we are part of the problem.

It is important to move beyond ideas of ourselves as “good” people and work towards actively addressing the webs of oppression that exist in our world, little bit by little bit. Here is an example about how ADAPT, the national disability civil rights organization, has taken a stance on the events in Charlottesville. Where might you be able to stake your claim to your own stance?  Check out these ideas for 10 ways to fight hate from the Southern Poverty Law Center.

Finally, I want to leave you with a challenging set of questions. Although there are many facets to the NASW Code of Ethics, let us remember that the mission of the social work profession is rooted in a set of core values, including the idea that there is dignity and worth in every person.  How would you respond to a client with a disability who actively identified as a White nationalist/Nazi if you were to be assigned such a client today? What if she didn’t want to work with you because you were a woman of color?  What if she had been arrested for street fighting during the “Unite the Right” rally and was open about her wish to “hurt Leftists?”  Based on your training thus far in this social work program, how would you approach your work with this client?

How would you respond to a client with a disability who actively identified as a White nationalist/Nazi if you were to be assigned such a client today? What if she didn’t want to work with you because you were a woman of color? What if she had been arrested for street fighting during the “Unite the Right” rally and was open about her wish to “hurt Leftists?”  Based on your training thus far in this social work program, how would you approach your work with this client?

Please leave your comments about this discussion prompt and how it might be improved or expanded upon.  All feedback is welcome.

Becoming the Champion for Supported Autonomy

Autonomy is often used to mean independence. Though their dictionary definitions are similar and they are synonyms of each other, I like to talk about autonomy in a slightly different way.

For me, autonomy is having the choice over when I am independent and when I am dependent. It’s similar to the notion of interdependence, except the latter, interdependence, suggests an ongoing process of co-operation or collaboration. Perhaps autonomy could include the choice of interdependence as well, but for now, I want to focus on the aspect of choice.

Many disability services have, at their core, a desired outcome of independence. Functioning on one’s own, without the help of others, is considered success. Dependence on others, by comparison, is seen as undesirable, costly and, hence, unsuccessful in the wonderful world of disability service provision. In the even more amazing worlds of case management and needs assessment, however, dependence could be synonymous with abject failure — or worse: disaster!

This obsession to make disabled people independent has always seemed absurd to me. No one is completely independent, after all — we depend on builders for houses; lawyers and police for protection (sometimes one from the other); artists to adorn our walls — and so the list goes on. And while cleaning the house is a relatively simple chore, many choose — and still others actually need — to pay others to do it for them.

So if someone, on account of their unique function, can’t — or at least find it difficult to — get dressed in the morning, why is so much emphasis placed on finding ways for them to do it themselves, independently, no matter the time or effort spent?

When I began to live “independently” at around 20 years of age, I did so with no support, apart from a flatmate who was as — or more — often out than at home. I’d start my day spending an hour abluting and getting dressed, including donning the most horrendously style-destroying footwear — gray sneakers with velcro straps — because I couldn’t tie laces. Then I’d have breakfast, only to have to begin the tortuous task of washing dishes, usually from the day — or more — before.

By about 11 am I’d stop for a cigarette, all the while relishing the anticipation of cleaning the house — be it vacuuming, dusting, cleaning the floors or, god forbid, the frigging toilet. By the time 1 or 2 pm came around, I was physically knackered, often in pain and more or less good for nothing for the rest of the day.

But, I was being independent.

I can’t remember how long it was that it took me to unbrainwash myself — longer than it should have, given I tend towards masochism as one of my learning edges. But I finally managed to process the cognitive dissonance slowly creeping into my consciousness: if “independence” meant doing nothing more than menial chores in unfashionable shoes, well, I didn’t want to be independent.

So, I threw myself into the wonderful world of needs assessment and disability support services (WWNADSS), learning very quickly the two cardinal rules of getting one’s needs met: 1. never say you can do something but it’s difficult, and 2. never say you can do something but it’s difficult.

Because something being difficult meant there could be an assistive device, designed to make things easier (ergo increasing independence). It could actually be badly designed such as the unfashionable velcroed shoes or more than likely useless and more time-consuming.

Thus, I learned the valuable lesson of black and white ability — not the competence to change ethnicity but rather that, in the WWNADSS, there were only two answers: 1. I can; and 2. I can’t. Later, I learned a third answer, the dismal future speculation: if I keep doing this one thing now, it’s highly likely to fuck me up so badly that, in 5-10 years’ time, I’ll be unable to do 3 things. Ergo more, perhaps unnecessary dependence will now equate to less independence henceforth. Net result, more independence. Success! A great rule that folks, learn it.

I exaggerate in jest — this was the 1980s and things are slightly less black and white these days (though its legacy lingers). I write this off the back of a lecture I did with case management students at AUT University yesterday. My point was that they reframe their role, from being the champion of independence, to being a facilitator of supported autonomy. In other words, guiding people to choose where and when in their lives they want to be independent and where and when they want to be dependent. It may seem an obvious change in understanding, but the old independence imperative is still surprisingly prominent in the WWNADSS as well as case management.

Who knows, had I not realised the impact of its potentially paralysing grip on my life, independence could have stopped me writing this post as I look back on a successful 22 years’ professional career. I could still be washing the dishes.

My Friend is a Superhero – The Story of a Free Children’s Comic Book About Diversity and Disability

Sometimes we need to be the change that we want to see in the world. Philip Patson – Creative and social entrepreneur, writer, comedian, human rights promoter, and award-winning diversity consultant – is the very definition of a changemaker. He is the Managing Director of Diversity New Zealand, an organisation which offers facilitated discussions, consultations, keynotes and workshops about embracing and working with diversity.

Philip, alongside psychologist Barbara Pike, and artist/illustrator Sam Orchard, have created a free children’s book, My Friend is a Superhero!. The story is about Jack, a boy who uses a wheelchair, and the story is told through his friend’s eyes.

Here at Social Work Helper, we’ve had the privilege of an exclusive interview with Philip, Barbara and Sam about their book My Friend is a Superhero!

Firstly, thank you very much for taking part in our interview! To start, could you please tell us about the origins of My Friends is a Superhero? How did the idea come about?

Barbara: The book came about as a result of casual conversations between myself and Philip while I was working as Philip’s EA for Diversity NZ.  I remember we were discussing children’s reactions to seeing a person with a disability compared to that of their parents.  For example, a child might see a person in a wheelchair and rush up to them to ask questions, or be shy and unsure what to say, or ask their parents rather loudly why that person can’t walk!!

Parents mostly seem to be quite embarrassed or not sure how to respond. However Philip’s perspective, as a person who uses a wheelchair himself, was that he would welcome and encourage children’s curiosity and learning.  He mentioned even finding it refreshing, since kids will typically jump right into a conversation about disability with no prior assumptions!

These conversations evolved into the idea for writing a children’s book to explore how their natural curiosity and openness might view the experience of disability.  I’m very nerdy and into superhero movies, comics and related media – and there is also an element in many superhero stories of the ‘hero’ having some kind of disability along with their superpower (Professor X from the X-men being the most well-known example).  So I had the idea of the child in the book viewing his friend, who uses a wheelchair, as being a secret superhero in his spare time – as a way of explaining his ‘special’ (or different) abilities.

Philip: I remember sitting at the lights driving home, talking with Barbara and the idea for the book was formed. I remember thinking how much easier it would be to write a book for kids, rather than adults, because, as Barbara said, there’s no need to “undo” assumptions in order to create a positive lens around function. Barbara’s perspective was so clear as well, given our working relationship, which made her perfect to lead the writing of the book.

The book centres on the idea of diversity. What is “functional diversity”, and why do you think it is important?

Philip: Functional diversity presents a more dynamic and constructive paradigm than the current dominant ones (for example medical or social models), to describe and change the impact of impairment and disability. It proposes different thought patterns, new language and constructive behaviour, reframing the distinction between “normal” and “abnormal” function as “common” and “unique”.

The ideology was inspired by my personal and professional frustration with the existing polarized ideology of human function, which fails to adequately describe the diversity of physiological and psychosocial function amongst people. It aims to provoke and inspire dialogue about our current paradigm of human function in relation to value and capacity.

Can you tell us about the process of creating this book together – what was is like, what were the rewards and challenges?

Barbara: The process of creating the book was remarkably simple and organic (but then, most projects at Diversity NZ are!)  I pitched the general idea to Philip, then we had a ‘planning and writing’ meeting ie: went to a local cafe for coffee and lunch!  We pretty much wrote the entire book at that meeting.  I remember there was a lot of ‘back and forth’ regarding the phrasing of different lines, but in the end we banged out something that we were both happy with.

The next step was illustrating – I’ll leave Sam to talk about the process of that.

Sam: The illustrations is where I came in! Barbara and Philip sent me the words, and I came up with some basic characters. I’d never drawn a wheelchair before, and there was lots of discussion between Philip and I about what type of chair Jack would have – and to make sure it didn’t look clunky or antiquated.

After we had the characters set out we all met up for about half a day, with a big whiteboard, and went through making thumbnails of how we wanted each page to look. That’s where the little pukeko idea came from – we wanted to include some fun moments that went beyond the text, and have a New Zealand flavour to it, so the pukeko was perfect.

Barbara: And the final step was finding the funding to publish.  We used PledgeMe – a NZ version of Kickstarter – and thankfully were able to meet our funding goals.  Philip, do you want to talk a bit about Duffy as well?

Philip: During 2012 I did the Leadership New Zealand programme. I met the Manager of Duffy Books in Homes, who provide free books to over 100,000 New Zealand children, three times a year. Linda loved “My Friend is a Superhero”, so we donated copies and I went to several schools to talk to kids about the book, disability and diversity.

Barbara: In terms of challenges there really weren’t too many.  We initially had another person volunteer to illustrate but it didn’t quite work out as we had different ideas about what we trying to achieve with the book.  Then we discovered Sam, who works professionally as a comic illustrator and whose drawings are incredible and really brought the story to life.  Figuring out how to raise the money to publish was probably the other big challenge.  We initially went down the route of applying for funding grants, but eventually stumbled upon crowdfunding – which was still a relatively new thing at that time, and luckily had great success with it.

Overall, I found writing and publishing this book to be a hugely rewarding process.  It was great that a little idea I had got turned into a reality, and that it was well-liked enough for people to crowdfund the publishing of it.  It  also amazing to know that physical copies went to so many homes and schools.  Again, working with both Philip and Sam is always wonderful and organic and easy.  Philip is someone who would take this idea and say “yep, let’s do it!” which is a great quality to have in a boss.

What factors did you have to consider when designing the character of Jack?

Barbara: We wanted to make Jack’s disability as “true to life” as possible.  That is, not to show him as an amazing kid who is good at everything, or as a kid having a terrible time of it – but to show him as a real kiwi kid, facing the ups and downs of growing up (and who happens to have a disability).  I also remember a lot of conversations about how his wheelchair would look!  We wanted it to be as accurate as possible, as any children (or parents) using a wheelchair would know exactly what we got wrong!

Philip: And while we wanted Jack to be “real”, we also wanted him to be cool, too, We hoped that, after reading the book, kids would be curious about functional diversity and feel freer to engage with kids who live with unique function.

The book shows Jack and his friend in a range of settings and scenarios. How did you pick these scenarios, and why?

Barbara: We picked scenarios that would be typical for school-age kids in NZ and tried to show both the positive and negative aspects of what life might be like for a child who uses a wheelchair.  So when walking home from school being able to power fast up the hill might be an advantage.  But having to leave class for lots of therapy appointments might not be so great.  We also wanted to be as inclusive as possible.  Jack goes to school, is in class, and plays at lunch with his friends, who don’t use wheelchairs.

Philip: A lot of the scenarios were based on my own experiences at school. I was lucky to be outgoing and confident as a kid, so I was pretty well included. I didn’t play on skate ramps and things, but I did have good networks of friends and mostly enjoyed school, at Jack’s age anyway!

In the story, we see Jack supporting others, such as exercising patience and helping his friend to study. What is the significance of showing these aspects of Jack?

Barbara: We didn’t want everything about Jack to be about his disability, so we tried to show other positive qualities you would want to see role-modelled in a kids book, like Jack helping his friend with maths in the classroom.  We wanted Jack to be seen by his friend as more than his disability (even though that was the main focus of the story) and of course for us to find out in the end that in fact Jack sees his friend the same way.

Philip: I think “disability” is portrayed so negatively generally. It was really important to show Jack in a reciprocal relationship with his friend, rather than perpetuate myths that having unique function makes kids needy and helpless.

The front cover of the book is beautiful. Could you tell us more about  how this design came about, and why it was selected?

Barbara: Sam, please take it away : )

Sam: Oh thanks! In terms of style Philip and Barbara pretty much gave me free reign to do what I wanted. As I talked about earlier, getting the type of wheelchair for Jack right was a big one, but everything else just flowed quite easily.

We wanted the colours to be bold, and the style to be simple and child-like so it was easy to absorb. This was the original sketch we did on the whiteboard…

Which became this:

And then this:

As we know, parents will often choose their children’s books or read to their child. What do you think makes My Friend is a Superhero useful for parents as well as for children?

Barbara: Parents (and society as a whole) shape how their children learn about the world, as well as their attitudes and values towards others, as they grow up.  We wanted to encourage more open conversations between parents and their children about disability, as well as challenge some negative stereotypes.  Disability is something with both positive and negative aspects – it’s just another human experience and we will all have a range of physical (and other) function throughout our lives.  We wanted to promote the idea of people in general (not just children) approaching others with curiosity and openness to difference.  We hoped that if parents were reading the book to their children, that it might encourage broader conversations about diversity and perhaps change how parents think too.

Philip: We’ve had tremendously positive feedback from kids and adults alike. I think people, in particular adults/parents, find the book refreshing. There’s something about the story’s simplicity and Sam’s vibrant images that reframes an issue that we really struggle with as a society.

My Friend is a Superhero is available online for free (although a hard copy can be purchased!) – what led to this decision, and what impact are you hoping this will have?

Philip: I read the other day that selling kids’ books, especially a first one, is incredibly difficult. We’ve sold a few but mostly we’ve given them away. As it was crowdfunded so generously it felt right to pass on the generosity. Adding the free download is, hopefully, another way to get the book out there. It’s doing no good unless it’s being read, after all!

The book is intended to promote a child’s “natural curiosity”. How do you think people usually respond to a child’s curiosity, and how could we do things differently?

Philip: Kids are so naturally curious and as they grow, that curiosity is often replaced by adults’ fears of difference, getting things wrong, sense of guilt and shame etc. “My Friend is a Superhero” intentionally shows that it’s ok to be curious and that uniqueness is interesting. As adults we need to be more aware of our fears, work through them and be intentional about not passing them onto our children.

And of course, I must ask – Who are your superheroes, and why?

Barbara: I don’t think I’ve ever been asked that before!  I work now as a Psychologist, and to be honest, my superheroes these days are the everyday people I work with.  People who are facing (or have faced) overwhelming difficulties in life and work so hard to overcome them…many even going on to start groups and programmes, or volunteer, to help support others who are struggling.  I find anyone who faces huge challenges in life – be it mental health difficulties, disability, abusive relationships, poverty or other unhealthy situations – and battles through to make a better life for themselves, to be an inspiration.

Sam: Oh! Gosh! Yeh, I’m on the same page of Barbara – my kind of superheroes are not necessarily the ones who you would know the names of. I’m always in awe of people who work steadily in the background, and who don’t need a lot of praise (because I love praise and I’m trying not to rely on it too much!) I think people who persevere, are resilient, and are generous are pretty phenomenal too.

Philip: I’m going to be shallow and just say my favourite superhero has always been Spiderman!

Is there anything else you think we should know about My Friend is a Superhero?

Barbara: Not that I can think of!  The book was published a few years ago now, so it’s lovely to remember the creative process behind it and know that it still generates excitement and interest : )

Philip: I agree – it’s been great to reminisce. We keep saying we should do another one. We should stop saying it and do it instead!

The Presidential Policy Series: Disability Rights

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The Presidential Policy Series covers where the Democratic and Republican presidential nominees, Hillary Clinton and Donald Trump, respectively, stand on healthcare policy issues.

Although it seems like our country’s two main political parties are as polarized as can possibly be, there actually has been a few health issues that both Republicans and Democrats have historically agreed on. Disability rights have traditionally been one such example.

Going back to 1990, the monumental Americans with Disabilities Act (ADA), which was authored by Democratic Senator Tom Harkin, passed by an overwhelming margin in the Senate and the House. President George H.W. Bush, a Republican, signed the act into law and applauded the bipartisan effort of Republicans and Democrats. Eighteen years later, President George W. Bush, also a Republican, followed in his father’s footsteps when he signed expansions of the ADA into law after receiving approval a Democrat-controlled Congress.

However, this long-standing trend of bipartisanship support has been questioned of late. In 2012, Senate Republicans blocked the United Nations Convention on the Rights of Persons with Disabilities treaty, despite a broad, bipartisan coalition. Republicans were split, and the Senate was unable to obtain the necessary two-thirds of votes to ratify the treaty. On top of that, this presidential campaign has only added to the uncertainty. Hillary Clinton has made disability rights a focus of her campaign, promoting her policy agenda in speeches and commercials. Whereas Mr. Trump has been criticized for making insensitive remarks and actions of those with disabilities, calling for less “political correctness.”

While disability rights are taking center stage with the two main candidates presenting different views, future bipartisanship still remains a likely outcome based on previously recorded party positions.

Republicans call for policy that supports the inherent rights of individuals with disabilities. The G.O.P. platform vows to support those rights by guaranteeing access to the necessary tools and education to “compete in the mainstream of society.” Republicans support increased access to education and competitive employment, and vehemently oppose non-consensual withholding of care or treatment of those with disabilities.

Democrats’ position on disability does not differ all that much from Republicans. They support “equal access, equal rights, and equal opportunities to make a life for themselves and to contribute to their communities.” Democrats support Secretary Clinton’s agenda, which vows to fulfill the promise of the ADA and continues to expand the opportunities for individuals with disabilities, especially improving access to meaningful and gainful employment, as well as housing in integrated community settings.

For the benefit of the more than 50 million Americans with disabilities, let’s hope we follow in history’s path with policy that both parties can agree on.

Disability Law, Policy and Civil Rights Movement

Helping Your Client Technically Qualify for SSDI and SSI

If you have a client with a disability or mental illness, he or she may want to apply for Social Security disability benefits. Before your client can be approved for disability benefits, the Social Security Administration (SSA) must verify your clients meets both the medical and technical eligibility requirements for disability benefits. Medical qualification is the same for both of the SSA’s disability programs, but technical eligibility rules differ.

Social Security Disability Insurance (SSDI)

SSDI is an “insurance” program that provides coverage for disabled workers. To qualify, your client must have:

  • paid into the Social Security system either through FICA or self-employment taxes
  • worked within the last 10 years
  • between 20 and 40 work credits available at the time of disability onset, although this will be even lower for younger applicants. The SSA does not expect a 21 year old to have worked as much as a 60 year-old applicant.

Work credits accumulate at a rate of about four per year for most workers. These credits build up as you pay employment taxes. Employment taxes may be either:

  • withheld automatically from a paycheck by an employer under the FICA tax code

OR

  • submitted to the IRS by self-employed persons as part of their self-employment taxes.

In either instance, employment taxes fund Social Security and Medicare. The taxes your client paid over your employment history make her a “covered person” under both of these insurance programs.

Supplemental Security Income (SSI)

SSI is a need-based program available to disabled persons of all ages and the elderly. There are no work credit requirements to qualify, but there are strict financial eligibility rules. To receive SSI, your client must meet the income and other financial resource limits.

When determining eligibility, the SSA specifically reviews your client’s:

  • earned and unearned income,
  • other benefits, like retirement or VA benefits,
  • money from other sources, like assistance from friends or family,
  • free food, housing, or other donated or gifted resources,

AND

  • any financial assets or other resources you have that could be converted to cash, like life insurance policies, savings bonds, and bank accounts, among others.

Although the SSA requires your client to disclose information about all of your finances, certain income sources and other financial resources are excluded from consideration. These include:

  • a percentage of earned income each month,
  • benefits you get through other need-based programs, like SNAP or TANF,

AND

  • one vehicle and your primary residence, if your clients owns his or her own house.

Financial resources from all countable sources cannot exceed the SSA’s established income and asset limit. This limit is reviewed and adjusted each year when cost-of-living increases go into effect. For 2016, the limit is $2,000 per month for an individual or $3,000 per month for a married couple in which both spouses receive SSI.

Applying for Benefits

If your client has worked enough to qualify for SSDI, or has income low enough for SSI, he or she can start the application process. Whether applying for SSDI, SSI, or both, your client can use the SSA’s online application portal, which allows applicants to fill out and submit all the required forms for an SSDI claim. The SSA can additionally use your client’s online application to start an SSI claim.

Some applicants choose instead to apply for SSDI at their local office. The SSA requires a personal interview to complete any SSI application, so your client may need to make a trip to the local office anyway.

When your client is applying for Social Security disability benefits, be sure to submit a letter outlining how your client’s illness keeps him or her from working. A social worker’s opinion and expertise can go a long way in helping your client win Social Security disability benefits.

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