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.

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.

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?

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?”

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

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

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

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

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

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

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

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

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

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

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

Teaching for Change

Why are you a teacher, and what is the point of doing the job you do? Teachers really need to think about those questions and hopefully reflect beyond the surface answers of wanting to “inspire” students. I doubt any of us really got into teaching to “fill gaps in the labour market” or decided that their true passion in life was watching students fill out multiple choice tests.

For most of us, I would say that at some level we decided to be a teacher to affect change in the lives of students and the communities in which we serve. We felt a connection to a profession in which we could work with children and youth to promote qualities that may have been lacking in the world as we saw it.

change-4-1imepycHowever, for any of us that have been teaching for any length of time. you have probably seen how the inequalities of our world have impacted our students and their ability to learn. Poverty, racism, sexism, ableism, colonialism and homophobia, amongst many more forms of oppression, infiltrate the walls of our schools and shape the real world experiences of our students.

Regardless if our students come from a place of privilege or oppression, these issues impact our classrooms and challenge us to confront them to ensure that the students we care for can overcome these issues as well as not perpetuate them as they move from youth to adults.

For teachers, it means that we cannot be ignorant to how these issues impact education and the lives of our students. Teaching is an inherently political act as the decisions we make from choosing to ignore these issues or confronting them demonstrates to our students the attitude we should have towards the major issues of our times.

If we want our students to have a chance of following their passions in life and to take on the major social and environmental issues of our time, we need to demonstrate a sense of courageous teaching that is not afraid to speak out against the issues that impact education and our students. Teachers must act in a way that promotes the ideals we strive for that would create a more democratic and equitable world for all.

That is why it is necessary that teachers eliminate the ideas of objectivity and neutrality from their practice. As one of the greatest educators of the 20th century, Paulo Freire said, “washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral”. As we see governments take on more austerity measures against education systems and demonize teachers in the media, it is essential that we assert ourselves as a profession that has the power to change society.

It is my hope that if you are a teacher reading this, you will join me in embracing a radical vision of what your teaching practice and the education system you work in could be. Teachers, in partnership with their union and other ally organizations, must understand the power we can have if we understand the principles of social justice and democracy. When you signed up to be a teacher, you also signed up to advocate for your students. I hope you’ll join me, and many other teachers, advocating for a more just and equitable world free from oppression for all people.

Until that day happens, teachers must engage in the long-term struggle for justice both in and outside of their classrooms. Social justice must be a centerpiece for why we teach and we must advocate for social justice as a framework for understanding teaching and education to our elected officials, unions and all others concerned with making the world a better place.

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