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.
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. I can recall learning about male and female genitalia as well as the common sexually transmitted infections. Contraceptive tools were discussed but the take-home message was always “abstinence is the best form of birth control.” 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 is the public school sex education experience I received as a non-disabled teenager. Seems quite lacking. And if this is what I received, what is the experience of children and adolescents with intellectual and developmental disabilities?
Working in a behavioral school for boys with emotional, developmental, and intellectual disabilities gives me an interesting perspective. The school serves boys aged, in my experience, between seven and eighteen years old. They age out of the school at eighteen despite the progress they have made and still need to make. These students come from any district in Massachusetts and can be of any race and ethnicity. Typically, the school serves a diverse population. They are taught the same subjects most other students in the country are taught just with more academic and therapeutic support. However, these students 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 relation to 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.
Confronting my personal ableism has been difficult, but I know it will benefit myself and others in the social work field who do the same. It’s important and necessary to challenge our own ideas. Gaining experience in areas which we hold biases towards educates us more accurately. Critically examining our personal ableist ideas pushes us to gain a different perspective. Through this difficult process, I feel empowered to advocate for a stronger sexual education program for these students and others in similar settings. I would not have developed this drive without looking inwards and confronting my ableism. I encourage all to do the same. Who knows what the next revelation might be?
Editor’s note: This reflection comes at a time when it is recognized that only three U.S. states explicitly include special education students in their sexual education requirements despite high rates of sexual abuse in this community. Specifically, the disability community experiences sexual abuse at seven times the rate of the non-disabled community according to the Department of Justice. Read more about this in a recent Op Ed by Cammie McGovern.
Max Goldberg is an MSW student at Salem State University. He completed his undergraduate degree at Roger Williams University, studying Psychology with a focus in Clinical Psychology as well as a minor in Professional and Public Writing. Previously, Max has held a range of roles in multiple educational settings. Upon completing his graduate studies, Max aspires to work with the Deaf community as an advocate and educate the hearing world on the various issues d/Deaf people face.
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.
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.
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.
Ableism is the systemic devaluation, marginalization, and oppression of people with disabilities (Mackleprang & Salsgiver, 2015). 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.
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 (Mackleprang & Salsgiver, 2015).
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 I assume I know how to teach, then I am inevitably going to fail to teach well. But, if I 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 I should always follow, rather it’s a tool box. It’s my job to invite the student to rummage around the tool box with me until we find the tools that work for them. Not to push this metaphor too far, but my specialized training doesn’t give me permission to build anything I want, it just teaches me to use a wide variety of tools. Some of those tools have the capability to do harm, especially in my hands.
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.
Mackelprang, R. W., & Salsgiver, R. O. (2015). Disability: A Diversity Model Approach in Human Service Practice (3rd Revised edition). Lyceum Books.
Sarah Rose Goldfinch is a MSW student at Salem State University in Salem, Massachusetts. She received her undergraduate degree at Boston University, where she student special education with a concentration in severe disabilities. She worked as a teacher in a large urban district, in a classroom serving students with moderate-severe intellectual disabilities. She is pursuing social work in the hopes of providing intersectional mental health care to children who struggle to access traditional systems because of their disability status.
I have been intertwined with the disabled community for my entire life. My older cousin was diagnosed with an intellectual disability at the age of 4 and I grew up very closely with her. My parents never told me she had a disability. To me she was who she was, my cousin Sara. Although Sara was significantly older than me, I didn’t think it was that strange that she played games with me, watched cartoons with me, or that she couldn’t drive. Sara is 10 years my senior, so she should have been getting her license instead of watching Power PuffGirls with me on Sunday afternoon. I never minded though. It wasn’t until I was older that I understood what an intellectual disability was.My parents always were, and my mother still is, a great educator. They had extensive experience explaining some pretty difficult things to me from a young age, such as being adopted, the concept of being transgender (my grandmother’s friend was a pretty famous trans photographer where I grew up), why my uncle had a husband, and a lot of other topics that many parents have trouble with explaining to their young children. And my parents did a great job.
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. Reflecting back on my time in the public school system, I contributed to a fair share of 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. I worked in a classroom with about 7 different children with a range of disabilities. 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. To not be able to communicate at 15 was terrible to me. I also remember them having few expectations for him. The entire day was mostly lifeskills teaching. I remember cooking alot with him, teaching him how to do laundry and other skills that the teacher thought would improve his chances of being more independent. I remember him not doing much academic work, and to this day, I’m not sure if he ever learned things like math or spelling when I was working with him.
I also remember how low the teacher’s and my expectationswere for him. When he would do the most basic of tasks, like throw away his trash, we would give him such high praise. I know now that my expectations should have been higher, and my praise emphasized his internalized ableism of having few skills. The expectations were so low that no one ever thought to put him in speech therapy.No expectations were placed on him to try and communicate other than the flashcards he carried around. But even those just said basic things like “bathroom”, “snack”, etc. No one thought he was capable of using a communication device or even typing on a computer, including me. I just followed what the adults did.They didn’t push him, so I didn’t push him.It never even crossed my mind that he was capableof doing more had he been taught these skills.
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 shouldhave been praised for every small task they completed,even though many of them werefully capable of doing much more. Why did I have such high expectations for my cousin Sara, but not for these students at my school? Why did I shift my attitude to pity? To this day, I still catch myself participating in ableism, but I catch myself a lot faster and try to correct myself. 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 push themselves 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. It’s awful having thoughts that you know are wrong but somehow cannot stop yourself fast enough from thinking. It brings me a lot of shame to admit them out loud. But I know that it is important that I do so that others can do the same. Admitting fault is the first step to overcoming the issue, and I have to keep reminding myself, no one is perfect.academic work, and to this day, I’m not sure if he ever learned things like math or spelling when I was working with him.I also remember how low the teacher’s and my expectations were for him. When he would do the most basic of tasks, like throw away his trash, we would give him such high praise. I know now that my expectations should have been higher, and my praise emphasized his internalized ableism of having few skills.The expectations were so low that no one ever thought to put him in speech therapy.No expectations were placed on him to try and communicate other than the flashcards he carried around. But even those just said basic things like “bathroom,” “snack,” etc. No onethought he was capable of using a communication deviceor even typing on a computer,including me. I just followed what the adults did.They didn’t push him, so I didn’t push him.It never even crossed my mind that he was capable of doing more had he been taught the skills. My participation in this classroom was harmful, and it changed the way I thought about the disabled 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 I have such high expectations for my cousin Sara, but not for these students at my school? Why did I shift my attitude to pity? To this day, I still catch myself participating in ableism, but I catch myself a lot faster and try to correct myself. 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 push themselves 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 andcorrect the internalized ableism they feel about themselves.I have come a long way fromthat girl in the classroom in the basement, but Istill have a long way to go. It’s awful havingthoughts that you know are wrong but somehow cannotstop yourself fast enough fromthinking. It brings me a lot of shame to admit themout loud. But I know that it is importantthat I do so that others can do the same. Admittingfault is the first step to overcoming theissue, and I have to keep reminding myself, no oneis perfect.
Author bio: Mia Hayden is a MSW student at Salem State University in Salem, Massachusetts. She received her undergraduate education at Roger Williams University with double majors in Anthropology & Sociology, and double minors in Psychology and Educational Studies. She is pursuing a masters in social work to help young children on their journey through the school system and on their way to adulthood. Being an Asian-American adoptee has driven her to become passionate about anti-oppressive practice and social justice.
I don’t want to be penned in by the perceptions of non-autistic people, or by representations that stop at the surface or tell the same story again and again. I want to reclaim space; I want to rest my weight against the boundaries set by others and push against them. Writing this is a push, making a little more room for myself and – I hope – others. Can you feel it?
Nell Brown, “This Love”
Being autistic*** in social work is hard. Persistent, harmful stereotypes about autistics paint us as lacking in empathy. Empathy, of course, is widely considered to be a key component of social work practice, so this stereotype about autism creates an environment in our field where we are scared to admit we are autistic for fear of being instantly labeled as lacking in empathy and therefore, not as effective at our jobs as our neurotypical peers. That fear of ours is not unfounded. When we admit we are autistic, we make ourselves even more vulnerable to ableism, bullying, and harassment from our peers. Thus, whether we open up about our autism or not, we are often left to deal with our internalized ableism (ableist ideas that we knowingly or unknowingly turn against ourselves) alone.
The very assumption that autism means low empathy is far from objective fact. The subjectivity inherent in a clinical diagnosis of autism invites researchers to rely on unfounded, wild conjecture (Jack, 2011). For example, though Simon Baron-Cohen’s Twitter account appears to demonstrate at least partially evolving thought on gender and autism, I know for certain that he had for many years openly insisted, based on his own opinion, that autism represents the “extreme male brain,” which he defined as inherently low on empathy (Baron-Cohen, 2005). His past gendering of autism influences cultural perceptions and representations of it to this day, which are dominated by white men and boys (think about TV shows like The Big Bang Theory, Atypical, and The Good Doctor, which all feature white male autistic people). Baron-Cohen’s theory not only stigmatizes autism but also erases the experiences of autistic women and nonbinary folx and gives currency to (cis)sexist ideas. The dominance of his opinion has nearly filled the vacuum; there has been little space for other conceptualizations of autism and empathy to surface (Jack, 2011).
However, at long last, new research is emerging which enables us as autistic people to humanize ourselves (Yergeau, 2013): we can think of others. We can be empathetic. This research has found communication and empathy between autistic and non-autistic people to be a relational process (Heasman & Gillespie, 2017; Morrison et al., 2019; Sheppard et al., 2015), and it helps to establish–from an academic, peer-reviewed standpoint–that autistic people do feel empathy. We may express it in different ways, but that doesn’t imply that autistic and non-autistic people can’t learn to communicate empathy so that both parties understand one another. This research aligns with Milton’s (2012) paper that suggested that while empathy has historically been measured based on the presence or absence of predefined socio-emotional traits, the truth about empathy may be much more complex than that. He argued that it is not a predefined trait, but rather a socially constructed reality that unfolds between two or more people over time. This broader interpretation of empathy flexes to allow for the inclusion of perspectives far beyond Simon Baron-Cohen’s rigid insistence on gendered brains.
Readers with interest in further exploring other ways of conceptualizing autism (including but not limited to autistic empathy) should consider perusing the following:
It’s heartbreaking to me that I feel I have to start out this piece by defending my ability to feel what others feel–subjecting myself to scans of the dominant and highly ableist/sexist literature–but experience has shown me that I must rigorously do so, or else allow others (including my colleagues in social work) to dehumanize me as “not empathetic enough.” I am willing to hazard a guess that the presence of such ableist ideas in social work plays a large role in autistic social workers’ choice not to disclose their autism. Having to assert one’s own humanity and empathic capability constantly is exhausting. No one wants to do it, and no one wants to face prejudice and discrimination. Many of us remain in the dark, suffering in silence–anxiety, depression, and self-doubt stifling our professional confidence. Until recently, that was me, too–but I am here to assert that all of us deserve to live freely in the light.
Indeed, when allowed to work openly as an autistic social worker without fear of ableist presuppositions about my capacity for empathy, I move through the world as if bathed in warm light and full of passionate electricity, hardly able to contain my joy in the social work profession. I can add so much more energy and life to this profession when I am able to live openly and don’t have to constantly fear prejudice and discrimination from my coworkers. I can draw from my deep well of experience as a disabled woman and openly share that with the social workers around me. I can throw myself into my work with a uniquely autistic passion and not worry that I will be judged.
Unfortunately, I’ve been told by certain social work colleagues in the past that I need to be more social, I need to get out more, I need to “live a little.” However, what those colleagues didn’t realize is that 1) I am the most extroverted person I know when I’m comfortable in my environment and 2) the time I spend hyperfocusing on my work and “not living” is often the time I feel most alive. To take my work away from me is also to take away a large chunk of my joy, a joy that I refuse to let go because I value and deserve it. My joy enriches my social work practice more than anything else. It also keeps me going and ensures my survival; I simply couldn’t live and work without it.
I remain forever thankful to my social work colleagues who open their minds to new and rehumanizing ideas about what it means to be autistic. I appreciate those who allow me to exist in this world authentically and lean into my joy, those who encourage and cultivate it in me. Without them, I could not do what I do.
Plain Language Summary
Empathy is a word that means being able to understand and share someone else’s feelings. Empathy is very important in social work. Being an autistic social worker is hard. It’s hard because some people think being autistic means we can’t feel as much empathy. That isn’t true. People might say we aren’t good social workers because we don’t feel empathy. That isn’t true either. A lot of the time, autistic social workers don’t say we are autistic. We worry about bullying at work. Not talking about it can make us feel lonely.
Simon Baron-Cohen is one of the people who says that autistics don’t feel much empathy. He says this is because we have “male brains.” That is his opinion. He does not have proof that his opinion is a fact. His opinion leaves out autistic women. It also leaves out autistic people who don’t identify as women or men. That means his idea does not include everyone. It is very popular, so a lot of researchers believe it is a fact. His idea is so popular that other researchers’ ideas about autism don’t get published or read as often.
Recently, other researchers have different ideas about autism. They say that we autistic people can feel empathy. Autistic people might show empathy in different ways than non-autistic people. That doesn’t mean we can’t show empathy so that non-autistic people understand. Empathy is something that happens between two people over time. It can’t always be measured. It is more complicated than having a “male” or “female” brain.
It is sad that I had to start this essay by explaining autistic empathy. I think that is why many autistic social workers don’t talk about our autism. It can be tiring to explain autistic empathy all the time. It is also hard to face bullying when we tell others that we are autistic. But not telling other people is also hard. Hiding our autism can make us sad, anxious, or upset. We deserve to be free of those difficult emotions. We deserve to leave the dark and live in the light.
I feel so much lighter when I don’t have to be afraid to talk about being autistic. I bring so much more wisdom to the work day. I have so much more energy and focus. People sometimes see my focus as a bad thing, though. They tell me I’m not social enough. They tell me I need to get out and “live a little.” When I’m sure I can be myself, I’m the most social person I know. I often feel the most alive when I am working. The work I do gives me joy. I want and deserve that joy. It makes me a better social worker and gets me through hard times.
I’m thankful to the social workers in my life who listen to new ideas about autism. I’m thankful that they let me be who I am and feel my joy.
***Language use around autism can be a contentious issue. Different parts of the autism community disagree about which language to use. Some autistic people prefer person-first language. Others prefer identity-first language. Person-first language is “people with autism.” Identity-first language is “autistic people.” The author of this post has chosen to use identity-first language. However, either one is valid. Social workers should respect the language clients, students, or colleagues use to refer to themselves and their disabilities.
Lynne Fetter is a disabled MSW student at Virginia Commonwealth University. She completed her generalist internship at the Center on Transition Innovations at VCU and will be interning at VCU’s Partnership for People with Disabilities starting in the fall of 2020 during her concentration year in Social Work Administration, Planning, and Policy Practice (SWAPPP). She has a particular passion for speaking and writing about disability representation in social work.
Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, 22(6), 740-750. https://doi.org/10.1177/1362361317708287
Morrison, K. E., DeBrabander, K. M., Jones, D. R., Faso, D. J., Ackerman, R. A., & Sasson, N. J. (2019). Outcomes of real-world social interaction for autistic adults paired with autistic compared to typically developing partners. Autism, 24(5), 1067-1080. https://doi.org/10.1177/1362361319892701
Rosqvist, H. B., Chown, N., & Stenning, A. (2020). Understanding empathy through a study of autistic life writing: On the importance of neurodivergent morality. In Neurodiversity studies: A new critical paradigm (pp. 1-16). Routledge.
Sheppard, E., Pillai, D., Wong, G. T., Ropar, D., & Mitchell, P. (2015). How easy is it to read the minds of people with autism spectrum disorder? Journal of Autism and Developmental Disorders, 46(4), 1247-1254. https://doi.org/10.1007/s10803-015-2662-8
We don’t talk enough about disability in social work. We certainly don’t talk enough about it when we consider that 25% of the US population experiences some form of disability (CDC, 2018). Specifically, social workers don’t discuss ableism (prejudice and discrimination against people with disabilities) and how it affects our profession inside and out. We also don’t discuss ways to make the social work profession truly accessible. How do we make our profession accessible from physical, sensory, cognitive, and emotional standpoints? We need to have that conversation.
I love this profession, and I believe we can do better. With that in mind, I’ve created the hashtag #CrippingSocialWork so that disabled social workers*** can find community and nondisabled allies can learn from us. It’s important to note that I use the term “crip” here because disabled people have reclaimed it as a positive term of disability pride and empowerment. It is firmly rooted in disability justice culture, which was pioneered by women of color–namely Patty Berne of Sins Invalid, Mia Mingus, and the late Stacey Park Milbern. Patty Berne (2020) explained that the disability justice movement seeks to center the voices of those most marginalized, including Black or Indigenous people of color and others who have historically been overlooked by the Disability Rights movement. Social work has a great deal to learn from disability justice culture. #CrippingSocialWork in particular was inspired by #CripTheVote, a hashtag created by Alice Wong and Andrew Pulrang (#CripTheVote, 2018). Why am I #CrippingSocialWork?
I’m #CrippingSocialWork because this profession, as it stands right now, is not one in which I feel I can breathe freely as a disabled social worker.
I’m #CrippingSocialWork because disabled social workers deserve to feel that our profession welcomes us, our perspectives, and our wisdom.
I’m #CrippingSocialWork because disabled social work students deserve to see disability representation in this profession.
I’m #CrippingSocialWork because our disabled clients deserve to feel heard and understood.
I’m #CrippingSocialWork because nondisabled social workers need to develop cultural humility around disability.
I’m #CrippingSocialWork because dismantling ableist systems is anti-oppressive practice.
I’m #CrippingSocialWork because every social work issue is a disability issue:
All of these issues we care about in social work (and more) intersect with disability in some meaningful and important way.
I’m #CrippingSocialWork because disability is a social work issue.
To my fellow disabled social workers: what does #CrippingSocialWork mean to you? Nondisabled social work allies–I challenge you to ask the disabled social worker(s) in your life what #CrippingSocialWork means to them. What will you do to make the profession more accessible to disabled social workers?
Together, we can change the conversation around disability in social work. I believe in us.
Social workers don’t talk about disability enough. We don’t talk about ableism and access. I made the hashtag #CrippingSocialWork to talk about these things. Allies can also use the hashtag to learn from disabled people. Disabled social workers and students deserve to feel valued. We deserve to see ourselves in social work. We need to serve our disabled clients well. Disability justice is part of social justice. Social work issues are disability issues. Disability is a social work issue. What does #CrippingSocialWork mean to you? What does #CrippingSocialWork mean to your disabled friends? I love this profession. I believe we can do better.
***Language use around disability can be a contentious issue. Different parts of the disability community disagree about which language to use. Some disabled people prefer person-first language. Others prefer identity-first language. Person-first language is “people with disabilities.” Identity-first language is “disabled people.” The author of this post has chosen to use identity-first language. However, either one is valid. Social workers should respect the language clients or students use to refer to themselves and their disabilities.
Lynne Fetter is a disabled MSW student at Virginia Commonwealth University. She completed her generalist internship at the Center on Transition Innovations at VCU and will be interning at VCU’s Partnership for People with Disabilities starting in the fall of 2020 during her concentration year in Social Work Administration, Planning, and Policy Practice (SWAPPP). She has a particular passion for speaking and writing about disability representation in social work.
Conversations about police violence are happening all over the world since the killing of Mr. George Floyd – among so many other Black, Indigenous and People of Color (BIPoC). Needless to say, it is a travesty that so many before him died and many didn’t have these conversations in the ways that people are having them now, but at least more people are having them now. 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 whose names are not known. We got to know the #sayhername movement. 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 there 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?
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 and in rare cases allowed for discussion of the intersecting forces that led to lethal use of force situations. The report concludes that “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.”
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.
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 fight for disability justice in your social work world?
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 has a disability policy statement, but they choose not to use the term “disabled” in a major change to their Code of Ethics (CoE). While the CoE is the guide post in our profession, and in setting out standards for practice, it doesn’t do so well on language use around disability. The names a series of diversity factors, including, for example, race, ethnicity and national origin. Until the most recent revision of the CoE however, NASW notes that “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 what they think of as 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. This is likely a turn off to people that embrace identity-first language (i.e. disabled people vs. people with disabilities). As a disabled person myself, I agree. What’s wrong with disability? There’s even a hashtag campaign out there called #SayTheWord in order to move people towards an embrace of the term. While we are talking about what is and is not offensive to disabled people, check out these words that are considered outdated and offensive, akin to “differently abled,” “handicapped,” or “special needs.” Also 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 in identity-first language use, 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.
The state of Florida has called for 17,000 volunteers to help out with the post-Irma recovery process, but there’s one population that are often forgotten in the crush of storm evacuation and disaster recovery efforts, and that is people with disabilities. Recently, at a social work conference, I was told “disability is not a social work issue,” which is a shocking statement, given that over one-fifth of the United States’ population has a disability according to the Centers for Disease Control. All too often, people with disabilities are left feeling invisible in our society – and as helping professionals, we need to right this wrong. In order to begin to do this work, especially given the impact of Hurricanes Irma and Harvey on our country, here are two things helping professionals need to know about people with disabilities.
Storms such as Irma and Harvey are very likely to have a disproportionate impact on people with disabilities – see Professor Rabia Belt’s commentary here. During Hurricane Katrina and surely many others, it came to light that many people with disabilities were unable to evacuate due to mobility limitations, equipment needs, staffing needs, requirements for service animals or just having a low income. We know that people with disabilities are much more likely to live in poverty in this country, and this can really take a toll during storm evacuations and disaster recovery. In fact, during Katrina, 155,000 people with disabilities aged 5 and up lived in the cities hardest hit by the storm – and unfortunately, a disproportionate amount of Katrina’s fatalities involved this population. Helping professionals need to see people with disabilities – and seek them out prior to, during and after a storm.
Given these realities, it is important to design disaster preparedness and recovery efforts so that they are accessible to all – including people with disabilities in keeping with the Americans with Disabilities Act. In the disability community, stories about people with mobility limitations, nursing needs and service animals being refused shelter or assistance are making the rounds. We must do better. The National Council on Disability wrote an extensive report on the topic of disaster preparedness, and it provides great guidance for disaster planning and recovery efforts – be prepared! There is also specialized guidance on how to create accessible programs and spaces for people with disabilities during and after a devastating storm in a way that promotes self-determination. People with disabilities do not want to be victims, and helping professionals should support their self-determination during evacuations, sheltering and recovery. Portlight Inclusive Disaster Strategies, an organization based in the southern United States, is the go-to source for assistance with people with disabilities during these storms. Please use their hotline for assistance with your clients with disabilities 1-800-626-4959. Their motto is drawn from the disability civil rights movement, “nothing about us without us.” As you gear up to provide help before, during and after these storms, keep this motto in mind and let it guide your practice. We can do better for people with disabilities, and we will.
Debates about how to refer to the people social workers support through the provision of care and service referrals ebbs and flows. We have moved on from the medicalized “patient” to the more neutral “client.” Some critique the “client” moniker, and have embraced a more business-like approach in the use of the term “consumer.” Some critique that approach as well given our society’s shift into a heavily consumer-oriented culture. While we may all just want to consider talking about the “people” we work with, one thing we should all give a second thought to is the use of the term “servicing” when referring to what it is we do as social workers.
Let me give you an example from an interaction I had with a student in class. She is my best student, but when she spoke about the people she worked with, she said “I worked as an Early Head Start Home Visitor and serviced prenatal clients as well as children under 3 years old.” In and around my classrooms, I can’t seem to escape social workers in training who are “servicing” their clients, especially those in the child welfare sector. Yes, we provide services, and we are service providers, but we should not be “servicing” people.
Inanimate objects, such as automobiles are serviced, or perhaps computer networks, but not the people we work with. By referring to the people we work with as being “serviceable,” I argue that we are inhibiting their agency – or their capacity to acting or exert power. Social workers are tasked – very clearly – with working towards social justice both for and with the people they work with. This is made clear in the profession’s Code of Ethics, which encourages us to partner with the people we work with. Given this, there is no room for drive-through “servicing,” a term that is way too provider-centric.
Finally, not only is the term “servicing” disempowering, it is also disrespectful. Many social workers that support people working in the sex industry report that the term “servicing” is used to refer to the provision of sexual services to a paying client in that industry. Political correctness should not factor in here, because words do matter in building rapport with people – and in respecting them. Please consider taking the time to reflect on how it is you refer to the people you work with!
I am a social work intern at the Big Sister Association of Boston. This is a unique organization, as it is the only gender-specific branch of Big Brother Big Sister in the United States. This is an important fact as research suggests that girls experience mentoring relationships differently than boys do. Additionally, research suggests that girls have gender-specific needs that can best be addressed by gender-sensitive support. One of the values of the Big Sister Association of Boston is cultural responsiveness, as the agency finds it important to learn about and embrace cultural differences – and this is where Disability culture comes in.
Disability social workers Romel Mackelprang and Richard Salsgiver discuss the emergence of Disability culture and assert that it is not only an identity but a ‘way of life,’ similar to race or ethnicity. I feel that it is critical that when conceptualizing how to be cultural responsive that Big Sister mentors keep Disability in mind as a type of culture. Recognizing Disability culture is important because we work with Little Sisters ages seven through twenty, as well as volunteer Big Sisters over the age of eighteen, and any of these girls and women may have a disability.
In addition to being aware of the language and history of Disability culture in order to show respect, we must also understand that there is a community aspect of Disability culture that can have great social benefits for the people we work with. The goal of our mentoring program is to strategically match girls with mentors who have similar interests and experiences as them. Therefore, making an effort to match girls and mentors with disabilities can have the added benefit of sharing an understanding of a common experience and culture, therefore making the match relationship even more impactful.
In their book, Romel Mackelprang and Richard Salsgiver share the story of Carolyn and Marnie, two women who met and “developed a sisterhood formed from shared circumstances….their self-concepts and meanings they ascribed to their disabilities were similar.” Further, the authors note that Carloyn and Marnie had “few or no role models with disabilities, their disabilities were defined as negative, shameful…were isolated from others like themselves.”
The concepts of sisterhood and community are two more of the Big Sister Association of Boston’s values, and increased confidence is an outcome goal held by the program. As the relationship between women can be so powerful, it is important that Big Sister staff recognize this potential and thoughtfully seek to make matches between women and girls who share experiences as people with disabilities. Big Sister Association of Boston values gender-specific programming, and it is important that this specificity carries over when thinking even further about what it means to not only be a girl, but to the intersection of being a girl with a disability in our society.
One way that Big Sister staff can work on developing knowledge about Disability culture as it relates to girls could be perusing the Gimp Girl website. As a refresher, the Georgetown Health Policy Institute defines cultural competence as “the ability of providers and organizations to effectively deliver health care services that meet the social, cultural, and linguistic needs of patients.” The Gimp Girl website can be used as a resource for Big Sister staff to assist them in the task of continuously working on their cultural competence by becoming fully informed about the views and needs of girls with disabilities in particular. As a non-disabled person, I have permission to access articles and presentations on the site and join their online public forums. The website also includes links to many blogs written by and for girls with disabilities, which can raise awareness of the most current issues and interests of this particular community.
Tuning in to Gimp Girl can help me practice cultural responsiveness by making me aware of the issues and concerns of interest to this population in order to most effectively meet the needs of girls with disabilities in a respectful and accessible way. Realizing that some people might prefer the term ‘gimp’ to the term ‘disabled’ might be important for Big Sister staff to realize vis-à-vis the debate between whether to use person first or disability first language. The website will also help staff to practice cultural humility by reminding them that girls with disabilities have distinct and individual needs, as they describe what it means to experience the intersection of gender identity and disability. Reading about girls’ varying experiences will encourage Big Sister staff to consistently check their own biases and assumptions as well as maintain their position as learners when interacting with girls.
In addition to increasing any given Big Sister staffmembers’ knowledge and awareness about Disability culture, staff will also be able to share this website with Little Sisters if they are not familiar with it. Our agency constantly provides Big Sisters with information, resources, and activities they can use when spending time with their ‘Littles,’ and this website could be a great resource. Big Sisters could explore the website with their Littles to find blogs that their Littles can relate to, or even help Littles join a Support Meeting in the online chat room. I think this resource is something that can benefit all of our staff and the girls and women we serve – and perhaps this will be true for you as well!
Erica Chepulis is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. She holds a B.A. in Social Work from Wheelock College. She hopes to continue her career in working with youth in programs that support their educational, social, and emotional growth and encourage them to reach their full potential. Ms. Chepulis chose to study social work practice with people with disabilities to learn how to most effectively and respectfully advocate for youth with disabilities and their families. Ms. Chepulis can be reached at firstname.lastname@example.org. This article reflects the opinions of Ms. Chepulis, and not the Big Sister Association of Greater Boston.