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

New Analysis: More U.S. Adults Identify as Disabled; Ethnic and Socioeconomic Disparities Persist

A new analysis led by Johns Hopkins Medicine researchers finds that the number of U.S. adults who report they have a disability is 27%, representing 67 million adults, an increase of 1% since the data were last analyzed in 2016. In this new study, which used data collected in 2019, before the COVID-19 pandemic, the researchers found a wide array of disparities between socioeconomic and demographic factors that persists among those who identify as disabled and those who do not.

“To reduce ableism and create more inclusive communities, our country must be equipped with data on the prevalence of disabilities and who is most impacted by them,” says Bonnielin Swenor, Ph.D., M.P.H., director of the Johns Hopkins Disability Health Research Center and associate professor of ophthalmology at the Johns Hopkins University School of Medicine and Wilmer Eye Institute.

Swenor and her research team analyzed survey data from the Centers for Disease Control and Prevention’s 2019 Behavioral Risk Factor Surveillance System, a collection of health and behavior information from annual telephone surveys of more than 400,000 U.S. adults.

Results of the analysis were published Oct. 21 in JAMA Network Open.

Approximately 27% of American adults reported a disability. When compared with the U.S. adult population, this represents 67 million adults. An additional 6 million people reported a disability since data on disability prevalence were analyzed and reported in 2016.

In the current study, approximately 12% of American adults reported more than one disability. Mobility was the most often reported disability type, followed by cognitive/mental, independent living (requiring help for daily tasks and outings), hearing, vision, and self-care (needing help with bathing, dressing and other personal care tasks).

In addition, the researchers analyzed socioeconomic and demographic data to better understand the prevalence of disability across intersecting groups.

“Developing effective measures and policies to include people with disabilities in all aspects of life needs to account for the variability in how people among different ethnic, socioeconomic, demographic and geographic groups experience disability,” says Swenor. “With robust data, we can strengthen the foundation of our knowledge about disability and develop tangible solutions.”

The survey data showed that, compared with adults without a disability, disabled adults were more likely to be older, female, Hispanic, have less than a high school education, have low income, be unemployed, and be bisexual, transgender or gender nonconforming. Digging deeper, the team found differences in disability prevalence based on sociodemographic groups. For example, Black females had a higher prevalence of disability than females of other races, and Black adults identifying as gay or bisexual had a lower prevalence of disability compared with gay or bisexual adults of other races.

Swenor and the research team note that an aging population and other factors may contribute to the increase in reported disability. The data include information from before the COVID-19 pandemic, and Swenor says there may be an increase in people reporting a disability resulting from long-term symptoms of COVID-19.

The research team aims to use these data to continue studying the experiences of disabled populations, including identifying and finding support and resources for people with disabilities and ascertaining the capabilities of schools and employers in supporting disabled communities.

In addition to Swenor, researchers who contributed to the report include Jessica Campanile, Jennifer Deal, Ph.D., Nicholas Reed, Au.D., and Varshini Varadaraj, M.D., M.P.H.

Zoom Differentiation and Accommodations

Though virtual learning is seemingly becoming less commonplace across the country, it’s still certainly around and likely will be for some time. And we all know that virtual learning has its challenges. Especially when it comes to differentiating in the virtual classroom. For students with special education accommodations, teachers will need to get creative in order to account for every student’s unique needs and optimize learning opportunities. Thankfully, there are strategies and methods for providing special education accommodations in Zoom—we just need to think outside the box and modify what each accommodation looks like in the virtual realm. Let’s take a look.

Zoom Chat

Since some are no longer physically in the classroom, proximity, prompting, and cueing accommodations pose a bit of a challenge for instructors. Yet, nothing has changed in terms of the student’s needs. In fact, students who struggle to focus and/or stay on task may need the prompting and proximity accommodations even more now that they are sitting in front of a screen. Online learning does not allow for physical proximity; however, teachers can utilize the chat function to maximize student engagement and provide an alternative form of proximity, prompting, and cueing.

Reaching out: The Zoom chat can be used to individually reach out to specific students with prompting accommodations to spur participation and to rephrase a question when necessary.

Clarifying: The chat also allows teachers to check for understanding by providing a platform for asking clarifying questions, follow-up questions, etc.

Advocating: Teachers should remind students of their chatting capabilities so that students with accommodations can advocate for themselves and speak up when they need assistance.

Tracking: The chat also acts as a data tracker; teachers can modify their settings in Zoom so that chats are saved. This allows for teachers to review correspondence with students and share questions and check-ins with parents. Teachers can also use saved chats to track the number of times a student initiates a task, asks clarifying questions, responds to polls or exit responses, etc.

Reminding: Teachers can use the Zoom chat as a method for reminding students of their extended time or reduced workload accommodations as well. This allows teachers to discreetly remind a certain student that his due date is extended without drawing attention to the student’s accommodations in front of the whole class. **Just be certain that, when chatting with specific students about these accommodations, you have selected the student’s name from the dropdown so that the chat remains a private, 1:1 conversation.

Breakout Rooms

The grouping function in Zoom can also be beneficial when ensuring certain special education accommodations are offered. Teachers have the option to manually assign groups, which means that students with special education services can be grouped with a para-educator or with other students who have the same accommodations.

Variance: Teachers should try to avoid always grouping special education students together, however, as to avoid drawing attention to certain small groups or stigmatizing students who need additional support.

Oversight: Teachers can randomly assign groups using the “automatic” option when creating breakout rooms. Then, while students work, the “host” can pop in and out of groups to act as a “check-in” for students with that accommodation.

Mobility: Teachers can also move the para-educator from group to group during breakout room sessions so that every student receives supports throughout the collaborative activity.

Discretion: Breakout rooms also offer opportunities for differentiation. Teachers can modify assignments and link adapted materials in the chat to send to specific breakout rooms. From the chat link, students can click on the shared Google doc to access the modified material. This function can provide students with resources such as word banks, sentence starters, outlines, graphic organizers, glossaries, etc. The key is that each student who receives these accommodations will have access in a discreet manner and can choose to use the materials as needed.

In short, there are many steps educators can take to ensure virtual learning provides differentiation and accommodation on a platform like Zoom. Though virtual learning may not be around forever, it still remains for some, and with that, educators must ensure they enhance the learning experience as much as possible.

What “Bachelor in Paradise” Can Teach us About Empowering the Disability Community

Are you a fan of “Bachelor in Paradise?” Whether you realize it or not, this season of the “Bachelor” franchise spinoff took on the topic of disability empowerment. Which is not exactly an expected topic for mainstream television. For years, the “Bachelor” series has been criticized for featuring primarily White contestants, and has worked to diversify the races and ethnicities of the people they draw on the show. But what about people from the disability community or people who identify as Deaf or hard-of-hearing?

Being disabled or Deaf or hard of hearing are also social identities in American culture – identities that should not be overlooked in the show’s representation. These communities represent what some refer to as the largest minority community in the United States at 26 percent of the U.S. population according to the Centers for Disease Control and Prevention. In the following, we’ll discuss more about why this year’s “Bachelor in Paradise” was so significant and what that may mean for social workers.

Introducing Abigail

A few years ago, we did have Sarah Herron on the show, a woman with a physical disability, although her presence was short-lived. But this season, the very first person down the stairs to the Mexican beachfront hacienda was Abigail Heringer, a 26 year-old woman who identifies as Deaf due to congenital hearing loss from birth. She received cochlear implants at the age of two but does consider herself disabled due to her hearing impairment and loss. Abigail was a central figure in this summer’s Bachelor in Paradise due to her romance with Noah Erb.

It was refreshing to see a disabled person in a romantic relationship given the history our culture has of thinking that disabled folks are asexual, incapable of having sex or in need of being protected from any kind of sexual contact. Abigail and Noah’s relationship has played out on television screens across Bachelor Nation – from their devastating breakup at the show’s conclusion to their rekindled romance announced subtly on social media later. This demonstrates that members of the disability community have relationships too, and that this is 100% normative behavior, with breakups, glitches, awkwardness, kissing and all!

The Dignity of Risk

So how does this relate to social work practice? One of the central tenets of good disability social work is how we need to honor the concept of the dignity of risk. This is the idea that everyone can learn from everyday risks. Central to honoring the dignity of risk is respecting an individual’s autonomy and self-determination to make choices. Also important, is the right for our clients to make choices even if social workers or other professionals in the person’s life feel that they could endanger the decision-maker in question. In order to respect a person’s dignity of risk, one should provide intermittent support even if others do not approve of the choice.

As there is inherent dignity in the experience of everyday risk, this concept suggests that limiting a disabled person’s ability to make even a risky choice, or limiting their access to the learning that comes along with a potentially emotionally painful risk, such as dating, does not foster overall wellness in the long run. Abigail, from this year’s “Bachelor in Paradise” is a wonderful example of the kind of empowerment needed, rather than sheltering one from risks in life.

Robert Perske famously wrote:

“Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become…”

Arguably, the dignity of risk may be among the most challenging tenets for social workers to embrace in their practice, but it is vital to accept given its intersection with self-determination. The dignity of risk also involves learning about the part of life that involves sexual and romantic relationships. Social workers need to remember to talk to their clients about sexuality in a developmentally appropriate manner. It is important not to cut off conversations about this topic, or to skirt the subject when it comes up. We must also support our clients in exploring how to engage in healthy relationships when they have the opportunities to be in them.

It’s wonderful that Abigail Heringer can be a model in reminding us of this important lesson for empowerment-oriented disability social work. One that embraces the dignity of risk for those who wish to date! With that being said, here’s to Noah and Abigail’s relationship!

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.

Sexual Education & Disability: Why it Should Matter to Social Workers

What do you get when you mix the taboo nature of discussing sexual intimacy with the social stigma surrounding intellectual and developmental disabilities? The answer: a heck of a lot more problems than you might think. Sexual education in the school setting is already a hot-button issue for non-disabled students. But when students with intellectual and developmental disabilities are introduced into the mix, so too are the ableist stigmas we all hold.

Taboo-Nature

I would like to start this piece with a brief exercise one of the health teachers at my high school conducted at the beginning of sex ed. Repeat after me: Penis. Vagina. Penis. Vagina. Why do you think she would make a room of teenagers yell these words in school? Isn’t that inappropriate? If you think it is, you proved my point from earlier. Sexual intimacy and anything loosely related to sex are currently incredibly taboo topics. To help break down the air of discomfort surrounding such topics, that health teacher did something many are afraid to do: she spoke openly and encouraged others to follow suit.

One could argue these topics are not to be spoken about simply because we are taught to not speak about them. A child can ask why their anatomy is different from their siblings, but they will often be met with shushes or roundabout answers. In many cases, there is no reason for this reaction other than traditional values. Those same values are often times what causes conflict in regard to sexual education in public schools.

My sex ed experience at a public school was mediocre at best. Genitalia, STIs, and contraceptive methods were discussed. Consent was not taught nor were the proper ways to actually engage in sex, just that if we did it we should do it safely. This was not the most educational experience. And if this is what I received, what is the experience of children and adolescents with intellectual and developmental disabilities?

The Institutional Deficit

Working in a behavioral school for boys with emotional, developmental, and intellectual disabilities yields an interesting perspective. These students are taught the same subjects most other students in the country are taught just with more academic and therapeutic support. However, they are not always provided with a health class.

I worry greatly about this institutional deficit, partly due to my own ableism. These students are receiving very little, if any, sexual education during the school year from our faculty and who knows what they see on the Internet and what their families and friends are telling them. As they get older and begin to develop their curiosity, I am worried that they might not always have a reliable source of sexual education. With that, the concept of consent is often discussed but not in the context of intimacy. I don’t know if the connection between consent and sexual activities has been made or if it ever will be in this school setting. I don’t know if some of these students would understand the magnitude of these topics. I’d like to think these kids can do anything, but from what I’ve seen I don’t know if I would feel confident in their understanding. I wish I could feel otherwise.

Deeper Issues

Individuals with an intellectual or developmental disability are seven times more likely to experience sexual assault than non-disabled people. In many cases, the perpetrator is another individual with an intellectual or developmental disability. Ableism likely prevents people from thinking this to be possible. Common stereotypes around this population convince the non-disabled community that these individuals can do no wrong and are by default sweet and innocent. Of course, this is not realistic. Another ableist stereotype, as seen above, is the incapability of this population to understand topics related to sexual education and sexual intimacy. Like the non-disabled community, however, individuals with an intellectual or developmental disability prove that idea wrong.

Why This Matters to Social Workers

So, if people with intellectual and developmental disabilities are able to learn about sexual education, and learning about sexual education dramatically decreases instances of sexual assault, then what is the reason for this population to not receive sexual education? The signs point towards ableism held by those in helping professions, with social workers being a perfect example. While the social work community prides itself on how educated and accepting they are of different identities, very rarely do social workers take the time to reflect upon identities they may not be as familiar with. Race and sexual orientation are examples of identities social workers study extensively, but disability as an identity and the depths of disability culture are rarely examined. To combat this, social workers need to begin the process of confronting personal ableism.

Confronting personal ableism is difficult, but doing so will only benefit social workers and others who choose to do so. It is important and necessary to challenge internal biases. Critically examining personal ableist ideas pushes social workers to gain a different perspective. Through this difficult process, one gains clarity in the issues they may not even know they wrestle with. Understanding how ableism impacts perceptions allows social workers to get a firm grasp on the disability community. They may begin to feel empowered to advocate for a change they never once considered, such as a stronger sexual education program for people with an intellectual or developmental disability. The importance of critically examining personal biases should be emphasized throughout the entirety of the social work community and by every social worker.

On the Inherent Ableism in Thinking You’re a Good Teacher

I taught special education in a sub-separate classroom for students with intellectual and developmental disabilities. I’ve also worked as a paraprofessional in inclusion classrooms with students with learning disabilities, health disabilities, and mental health disabilities. I’ve planned lessons and units and activities. While I’m far from the most experienced teacher in the world (and far from the best, as well), I think I’ve gained a few insights along the way that I hope will shape how I see the world and how I approach practice as a social worker in the years to come. In my time as a teacher, I came to see that myself and other teachers had a tendency to engage in Ableism, and that needs to change. Allow me to explain what I mean:

There’s a point in a lesson, when you’re looking out at a group of tiny faces (or not so tiny faces, depending who you teach) and it becomes obvious that they’re just not getting it. But, you think, I wrote a good plan. I broke everything down three times over. I had all my materials prepped. We’ve covered all of the necessary background information in class.

They should be getting it, you think. You did everything right. You’re a good teacher.

So. You’re in the middle of the lesson and the kids aren’t getting it, or a few kids aren’t getting it, or one kid isn’t getting it, and maybe you decide I’m a good teacher, and if I follow my carefully thought-out plan, they will get it. This is ableism.

What is Ableism?

According to Disability: A Diversity Model Approach in  Human Service PracticeAbleism is the systemic devaluation, marginalization, and oppression of people with disabilities. The sort of ableism that I’m talking about here is cagey. It’s not explicit. If you asked me, when I was in the previously described scenario, whether I thought I was being ableist in deciding to continue with a lesson when I knew my students weren’t getting it, I would have been outraged. I would have argued that I loved my students, that I embraced their differences, and that I would never engage in any form of ableism.

But in the scenario above, I am deciding that I am superior in two ways.

How I Was Wrong

First, I am assuming that the way I understand, conceive and learn things is the ‘correct’ way to do so. My plan for a lesson is always, at least in part, based on my understanding of how learning progresses and on ‘best practice’ for a generalized population. Often my students learn in very different ways than I do, though. Some of them need music. Some of them need to see it all written down. Some of them need pictures. These ways of learning are not more or less ‘correct’ than the way I learn, or the way ‘best practice’ assumes that students learn. When my lesson isn’t reaching them, it’s because there’s a mismatch between how I am teaching and how they learn. It’s my job to teach, and therefore it is my responsibility to address this mismatch.

The second way that I am deciding I am superior is that I am choosing to believe that my ability to understand what the students need is better than their ability to understand what they need. This sort of paternalism, of thinking I know best is a hallmark of ableism.

Maybe you’re thinking but it’s a teacher’s job to know better, to instruct. It’s not, though. A teacher doesn’t know a child better than they know themselves, and when it comes to working with students with disabilities, the students are the experts, regardless of their age. My students typically had challenges with communication — they couldn’t always tell me, hey, you’re explaining this wrong or I don’t get it. They couldn’t always tell me what they specifically needed in order to do well, or what would help them understand better, so it was my job to pay attention to what they were communicating in non-standard ways.

If we as teachers always assume we know how to teach, then we’re inevitably going to fail to teach well. But, if we approach each student and lesson with flexibility and the willingness to say I messed up or this isn’t working then all of us will learn more. Teaching isn’t a set path and plan that we should always follow, rather it’s a tool box. It’s our job to invite the student to rummage around the tool box with us until we find the tools that work for them. Not to push this metaphor too far, but our specialized training doesn’t give us permission to build anything we want, it just teaches us to use a wide variety of tools. Some of those tools have the capability to do harm, especially in our hands.

Moving Forward

I’m not a social worker yet. I haven’t even had my first field placement, and I don’t have very much experience of the social work field at all. But I think there’s a lesson here for anyone who works in a ‘helping profession’ that places them in a position of authority in other people’s lives. This lesson is: it doesn’t matter how many letters you have after your name, or what you have studied, read, or experienced. You’re an expert only until you meet the next student, client, patient, and then you have to start from scratch. The worst teaching I have ever done is when I assume I know how to teach something. The best moments of teaching I have ever done have been guided by the students in my class — once they have shown me how they learn, then I can teach meaningfully. Each student is different. Each client is different. Each person is different.

When I start seeing clients, I think this will also hold: the best help I will ever offer will be guided by a person showing or telling me how they can be helped. I am not the expert, I will never be the expert — I’m just a person with a box of tools and a willingness to help.

Case Study: Reasonable Accommodation in Social Work

The social work field is often full of situations that are not straight forward. On a Reddit social media post, a social worker reached out to the social work community for advice on a particularly unclear situation. The social worker runs a solo, private practice in a small town, and recently had a request from one of her clients that she is struggling to navigate. This client has hearing loss and would like to communicate with American Sign Language in therapy sessions moving forward. The social worker identified a potential option for interpreting services, but it comes at a high cost. She knows it is her responsibility to pay for the interpreting service, even though it will cost more than the payment she receives for the sessions. Despite this, she is trying to figure out the best way to serve her client.

Since her private practice consists solely of her, she does not have coworkers to consult with. She also does not have an agency resource that is already in place. Additionally, there are few options for interpreting services in her small town. She poses a few questions to the reddit community, aimed at gaining a better understanding to serve her client. Responses suggested she try video interpreting services, which can often be a cheaper alternative. In considering the accommodations a social worker should provide, consulting the Americans with Disabilities Act (ADA) is especially useful. Under the effective communication section, it’s outlined that the interpreter service must be provided unless it causes undue financial burden. In a situation where this does happen, the provider must find a suitable alternative. In this instance, an in-person interpreter might cause undue burden, but a video interpreter might not.

This social worker is being reactive to the needs of this client, and proactive with the needs of future clients. She shared her idea to set aside a specific amount of money each year for interpreting or similar services. She also asked the reddit community if there were any other issues she should be looking at in this scenario. This shows a social worker who is committed to her clients and has their well-being and best interests in mind. With that being said, lets review the National Association of Social Workers Code of Ethics and the Americans with Disabilities Act to better understand how they specifically apply to this scenario.

The Code of Ethics

Social workers have an ethical and legal obligation to provide adequate services for their clients. This social worker is trying do to the right thing for her client by following the ADA and the National Association of Social Workers Code of Ethics. In the NASW Code of Ethics, the first standard is the Social Workers’ Ethical Responsibilities to Clients. Within that standard, the first section outlines a social worker’s commitment to their clients. This means that a social worker’s actions should always be in the best interest of the client. There may be instances in which the social worker has to adhere to certain laws or rules that go against what the client wants, but this is necessary in limited circumstances.

Americans with Disabilities

In the United States, approximately 15% of adults experience some form of difficulty with hearing. Providing therapy to a Deaf or hard of hearing individual comes with unique circumstances for practitioners. Oftentimes, Deaf or hard of hearing individuals do not experience accurate assessment or diagnostic information due to these circumstances and the shortcomings of practitioners. The NASW has put together a briefing regarding the obligations social workers have when working with individuals who are Deaf or have hearing loss. When working with clients with any type of disability, social workers must provide services that are appropriate and serve the best interests of their clients.

Approximately 1 in 4 Americans are living with some type of disability. The most common types of disabilities are those relating to mobility, cognition, independent living, hearing, vision, and self-care. Any type of disability may mean that an individual needs accommodations in a therapy setting. One of the first steps in providing adequate care for someone with a disability is to understand what barriers are in place for that person. Awareness and education are key elements to providing competent and adequate services for an individual.

Wrapping it Up

A social worker’s role is to act in the best interest of their clients whenever possible. This includes individual therapy sessions, as well as ensuring that future clients receive adequate treatment. Outside of individual therapy sessions, social workers often wear many hats. Social workers are strong advocates, initiators of change, and fierce activists. These are all important roles for social workers to bear when upholding their commitment to clients. Social workers often go above and beyond for their clients, and this is especially evident in cases like the one above.

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?

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? 

Tourette Association of America marks National Tourette Awareness Month with Engaging Virtual Events and Activities

Tourette Association of America via Facebook

The Tourette Association of America (TAA), the premier national nonprofit organization serving the Tourette Syndrome (TS) and Tic Disorder community, will host a series of virtual events and activities in honor of Tourette Awareness Month, May 15 – June 15.   Tourette Syndrome (TS) is a neurodevelopmental disorder, impacting an estimated 1 million Americans, characterized by sudden, involuntary movements and/or sounds called tics. 50% of individuals impacted are going undiagnosed due to the lack of awareness, lack of general understanding about the condition and stigma.  The misunderstandings often lead to misdiagnosis, alienation and bullying. 

In response to these uncertain times, the TAA has launched feel-good initiatives and comprehensive virtual events to keep the community engaged. Those impacted by the condition have been experiencing heightened symptoms like coughing, sniffling, and throat clearing tics, as well as extreme anxiety, OCD, depression and other co-occurring conditions. These symptoms may be crippling, hindering the ability to fulfill basic needs. In addition, social distancing has heightened mental illness, tics, and co-occurring conditions for the community.  These virtual events bring our community to the forefront during the COVID-19 era, helping to create a more universal understanding of the challenges faced each day, as well as to share successes: 

Virtual Quilt

The TAA has designed a virtual quilt to showcase the Tourette Syndrome and Tic Disorder community, entwined with stories of inspiration, hope and community. This virtual quilt is a narrative of the unique experiences and stories to embrace and comfort one another. TS may impact everyone differently, but we are all woven together in community. It symbolizes their resilience, resourcefulness, and optimism. 

Tourette Pledge

TAA is asking people to take a pledge to not use Tourette Syndrome as a punchline, descriptor or slur.   This effort serves to raise understanding and acceptance for TS and Tic Disorders, as well as highlights the progress we have made as a community. 

Miles for Tourette May 15-June 15: Participants can virtually walk, run and cycle to raise funds and awareness for TS.  Tourette Awareness Month that supports the TAA’s mission to make life better for all people affected by Tourette syndrome and Tic Disorders. Each week will feature fun and exciting initiatives. Funds raised will benefit research, support necessary programs, and foster social acceptance of Tourette.  

Teal Tuesdays: May 26, June 2, June 9 – Wear teal on Tuesdays to support Tourette! Ideas include: teal clothing, ties, bracelets, buttons, hair accessories, nail polish and more! Participants are asked to get creative and post pictures on Social Media!

“We are committed to raising awareness and fostering social acceptance of Tourette, which affects 1 in every 100 school-aged children,” said Amanda Talty, President & CEO of the Tourette Association.  “We want people to see the Tourette community beyond their tics. They are diverse and talented and bring incredible gifts as students, leaders, parents, teachers, actors, musicians, athletes and so much more.”

About Tourette Syndrome and Tic Disorders

  •     Tourette Syndrome is a neurodevelopmental disorder characterized by sudden, involuntary movements and/or sounds called tics. They can include eye blinking, head jerking and facial movements — throat clearing, sniffing and tongue clicking.
  •     The involuntary utterance of obscene words is called coprolalia, and it’s much rarer than people think: Only 10 percent of people diagnosed with Tourette experience these symptoms.
  •     There is no cure for Tourette. The cause also remains unknown, but it is thought to involve genetic, neurological and environmental factors that can be treated.
  •     Tourette is underdiagnosed. Many children, parents, teachers and even physicians don’t fully understand TS, which can lead to bullying, a lack of community support, an improper diagnosis and a host of other issues that impair the quality of life for someone with TS.

The Tourette Association of America (TAA)

Founded in 1972, the Tourette Association of America (TAA) is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. As the only national organization serving this community, the TAA works to raise awareness, advance research, and provide ongoing support to patients and families. To this end, the TAA directs a network of 31 Chapters, 83 support groups and recognizes 20 Centers of Excellence across the country. For more information on Tourette and Tic Disorders, call 1-888-4-TOURET and visit us at tourette.org, and on Facebook, Twitter, Instagram and YouTube.

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 Universities Can Better Support Student Caregivers

More than half of family caregivers are between the ages of 18 and 49 years old – and as the U.S. population ages, increasing numbers of these caregivers will be enrolled in colleges. Often categorized as “nontraditional students,” college-enrolled caregivers are responsible for children, spouses, and dependent parents with disabilities and chronic illnesses. Nontraditional students of all kinds are more likely to drop out of higher education because of obstacles in their non-academic lives, and this certainly holds true for those who have to balance caregiving with their studies.

Historically, Student Affairs professionals have developed programs and services to meet the challenges faced by underrepresented and underserved students. Given the growing prevalence of student caregivers, academic institutions should keep their needs in mind when distributing funds and creating student support services. While each student caregiving experience is unique, the fundamentals are constant. Very often, student caregivers must choose between attending to a human being for whom they are responsible or attending to academic tasks.

Students managing such choices, balancing caregiving and academic demands, face significant barriers. For example, the amount of time they are able to spend with faculty and advisors is often limited by their caregiving responsibilities. Furthermore, efforts to disseminate information about support services on college campuses typically focuses on traditional students and thus may miss or leave out nontraditional students who are not part of established campus communication channels.

Student-Centered Teaching Can Help Caregivers

Student-centered teaching focuses on individual learning needs to promote persistence and success. Effective student-centered instruction is based on the understanding that one size does not fit all. When an instructor makes accommodations for student caregivers as emergencies arise, such flexibility demonstrates empathy and can promote success rather than indicate compromised standards.

Consider the following examples from the lives of student caregivers I interviewed in my research:

  • Waldo told me about his experience during his first year of college. He began caring for his mom, who had Huntington’s Disease, while he was in high school. He grew up in poverty and was the first person in his family to go to college. He chose to stay at home and commute to college so he could continue to care for his mom and save money. During finals week of his freshman year, his mom required brain surgery because of a fall. He asked his statistics professor if he could take the final at an alternative time due to his mom’s surgery. The professor replied that it was his choice whether he came to the final or not, but he would not alter the time.
  • Alex, an assistant professor, cared for his mom who had a stroke while he was completing his PhD. He told me he was lucky the stroke occurred around Thanksgiving, when he had a break from the regular requirements of the semester. As he navigated his mom’s recovery, Alex only had to negotiate with his dissertation chair – who allowed him to alter deadlines to ensure he had the time he needed to care for his mom.

Alex’s dissertation chair practiced student-centered teaching, while Waldo’s professor did not. The advantages to students of such teaching are evident, especially for student caregivers, who need a flexible learning environment to succeed academically and develop healthy coping skills while contending with the overriding needs of those for whom they care.

Student Caregivers, Technology, Insurance, and Health

Student caregivers are at a higher risk for stress-related illnesses than their peers, due to their time constraints and intersecting roles; and such difficulties can be compounded when students lack the time and resources to develop healthy coping strategies. Nevertheless, higher education policies have the potential to improve long-term health outcomes for student caregivers by providing access to appropriate supports and resources. Health is at the core of student learning and success. It is in the interest of university administration to ensure access to institutional support and resources, as the following examples suggest:

  • Natalia, a PhD candidate and caregiver, struggled with anxiety and depression. Her dissertation advisor empathized with her situation and allowed her to work remotely instead of commuting to campus when her mom needed care. She was fortunate to have access to all of the university’s technological resources while at home caring for her mom. Natalia’s advisor also encouraged her to apply for emergency funds. The flexibility and knowledge about university resources that Natalia’s advisor provided, helped her develop and employ healthy coping strategies.
  • Anne, a master’s degree student, told me about the university resources she received as a student caregiver. Assistive technology provided by her university was installed on her personal computer, allowing Anne, her husband, and their children to navigate various tools for coping with learning disabilities. Student health insurance provided by the university allowed her to get allergy shots, orthotics, and counseling to cope with anxiety and depression. Financial aid both increased and decreased stress. She worried about paying back the loans, but before she enrolled in graduate school her family did not have the financial reserves to weather a crisis.

Toward Equity for Student Caregivers

Like other students, caregivers seek higher education to improve their economic and social resources, but they face many obstacles and graduate less often than traditional students. To level the playing field for all students, administrators should ensure all students have access to health insurance, appropriate personally tailored learning technologies, and the flexible schedules and supportive resources they need to study even when caring for others. Colleges, students, and society alike only stand to benefit if student caregivers face easier routes to degrees.

Read more in Lisa Schumacher, “The Lived Experience of Student Caregivers: A Phenomenological Study,” University of Iowa, 2018.

Four Ways Neurodiversity Holds the Key to the Future of Special Education

 

For ages, special education has been developing on its own, together with the development of ordinary education. It emphasizes disorders and the ways special education students are lacking compared to an average student. Those who have a noticeable dysfunction have even been mocked for their lack of focus or skill to learn something – sometimes by teachers too.

And even though the history of the special education has been filled with inappropriate names and terms, the future is bright. More and more scientists and educators are turning to the better ways of conducting special education – and one of those ways is related to neurodiversity.

This term was first used by journalist Harvey Blume in the early 1990s and means that autism, ADHD, dyslexia, and other special-needs conditions are the part of normal variations in the human population. And here is how neurodiversity changes the entire special education system.

1. In theory.

Special education as it is at the moment regards disability categories as something originated from biology, genetics, and neurology. Neurodiversity, on the other hand, focuses on the advantages these disabilities have to offer – they use this to explain why these genes are still here today and why people are still born with disabilities.

This new concept examines how a person with a disability can be lacking in some aspects but even more advanced than regular people in some. During the past decade, university programs such as London School of Economics’ Dyslexia and Neurodiversity program, or the College of William & Mary’s Neurodiversity Initiative are aimed to support neurodiverse students and create positive acceptance and niches for them.

Annabel Gray, neurodiversity specialist and educator at Origin Writings states, “Regarding a person as completely disabled is fundamentally wrong. Whereas a person with, for example, autism can be lacking in some areas of life, on a job which requires focus and attention to detail, this same person would do outstandingly well.”

2. The focus.

The focus of special education so far has been solely on assessing deficits and how to go about educating students based on these deficits. However, neurodiversity relies more on assessing the strengths, talents, abilities, and interests of disabled students. It is a strength-based approach where an educator would use a series of tests to discover the student’s abilities and teach them how to use them to tackle their everyday and educational challenges.

What is so great about neurodiversity approach is it gives the students all the necessary tools to cope with their day to day life by focusing on what they do best. This way the students are not feeling left out and they know there are some things where they can thrive in.

3. Workarounds.

Workarounds are another way the neurodiversity improves the disabled students’ lives. What it essentially means is the educators are supposed to find ways for students to experience and learn which does not include their disabilities. For example, students with ADHD could be allowed to use special tools like stability balls or standing desks in order to focus on studying.

This could be expanded to create an individual education plan for each student based on what they need and in which environment they thrive the most. Placing those students in the traditional learning environment will help them to feel “lesser human being” or a burden.

Lila Christie, an educator at 1Day2Write and WriteMyX confirms: “Workarounds are some of the best ways of teaching the disabled students. We implement this strategy of putting each student in an environment that will allow them to learn without anything in the way. It not only works but also gives students the satisfaction and comfort.”

4. How to communicate with students.

While most special education programs still teach children about their disabilities, neurodiversity teaches them about the value of variation and being different. It teaches them how their brain works and how the environment affects it, how to use their skills to the maximum etc. This kind of mindset can help them realize the growth mindset can improve their performance.

To get the brain to its full potential it is important to get the students exercising in various ways, each suited to their own abilities – writing exercises are excellent ways to improve brain power and it can be easily accessible to students through tools such as Dragon NaturallySpeaking, Windows Speech Recognition, etc.

Conclusion

Neurodiversity is a great new approach to special education. It gives students opportunities and new ways of understanding themselves. This is a fresh take on educating those with disabilities – in fact, it relies more on their abilities and strengths. It can give students confidence and tools to be successful and do more later in their lives.

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.

Scottish Journal For Residential Care: Final Call for Views and Experiences of Disability

The Scottish Journal of Residential Child Care (SJRCC) is inviting submissions for a special themed issue on disability to be published in December 2018.

We are seeking ideas for papers now on any aspect of disability and residential child care – or indeed any aspect of care, or leaving care. We’d like to hear from academics, from people involved in caregiving, and from young people reflecting on their own experience of care and disability.

Although published here in Scotland, the Journal has an international outlook. And this makes sense because concerns about the welfare of children in care is a global one, and international comparison provides us all with an opportunity to develop research, policy, and practice.

We’re always looking for contributors from across the globe to share their wide and varied experience – from practitioners, managers, researchers, and policy folk, to young people with experience of the care system.

Papers from countries other than Scotland are particularly welcome.

Submit now

If you would like to be considered, please email our Guest Editors by Wednesday 31 January: sjrcc@strath.ac.uk. You will need to provide:

  • a paragraph with your ideas
  • five keywords
  • your brief biograph (maximum 70 words).

Brief for contributors

We welcome:

  • Academic papers of up to 6000 words in length
  • Practice accounts of up to 2000 words in length
  • Using everyday life activities with individuals with disabilities
  • ‘Breakthrough’ moments when someone showed surprising potential
  • Reflections on situations which helped a fuller understanding of someone’s needs
  • Creating positive environments
  • Changing approaches – working therapeutically.

Open call: submit your ideas and work to the journal

We welcome and publish a real variety of articles and papers on all topics related to residential child care.

  • Peer-reviewed academic papers
  • Short reflections or commentaries on research, policy or practice
  • Methodological papers from doctoral studies
  • Accounts of relevant conferences
  • Book reviews
  • Obituaries

For more details, download our submission pack.

The Scottish Journal of Residential Child Care is a peer-reviewed, open access e-journal which aims to provide a rich forum for debate and dissemination about the topical issues in residential child care research, policy and practice.

The topics covered are wide-ranging and relate to all aspects of residential childcare, including the interface between residential care and other contexts, such as health, education and other care settings, as well as topics relating to children’s wellbeing in public care.

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