Sexual education & disability: Why this should matter to social work practitioners

Image from Stand up! A feminist youth-led project in Scotland that addresses sexual violence (https://www.standuprasash.com/blog/where-has-all-the-sexual-education-gone)

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. 

On the inherent ableism in thinking you’re a good teacher

We need to be reflective practitioners, always, as we look out for our own ableism. Image from Widener University: https://www.widener.edu/academics/graduate-studies/special-education-med

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. 

References

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. 

Unlearning ableism, a social worker’s duty

Ableism shouldn’t be a dirty word – we all need to confront the ways in which it sits within us so that we can do better! Image from: https://rehabpub.com/industry-news/research/study-sheds-light-ableism-biases-toward-people-disabilities/

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.

#CrippingSocialWork: Why Disability is a Social Work Issue

Image shows the hashtag #CrippingSocialWork in white letters against a solid blue background. This hashtag was created by social worker Lynne Fetter.
Image shows the hashtag #CrippingSocialWork in white letters against a solid blue background.

Audio recording of the essay “Cripping Social Work: Why Disability Is a Social Work Issue”

Lynne Fetter // @LGFetter

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. 

Plain-language summary: 

——-

Audio recording of the plain language version of this post.

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. 

——-

Audio recording of the language note and author bio

***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. 

References

#CripTheVote. (2018, March 27). Frequently asked questions. #CripTheVote. https://cripthevote.blogspot.com/2018/03/frequently-asked-questions.html

American Civil Liberties Union. (2020, July 2). Disability rights and the criminal legal system. https://www.aclu.org/issues/disability-rights/disability-rights-and-criminal-legal-system?redirect=issues/disability-rights/disability-rights-and-criminal-justice

The Arc. (n.d. [a]). Education. https://thearc.org/policy-advocacy/education-policy-advocacy/

The Arc. (n.d. [b]). Housing. https://thearc.org/policy-advocacy/housing/

Berne, P. (2020, June 16). What is disability justice? Sins Invalid. https://www.sinsinvalid.org/news-1/2020/6/16/what-is-disability-justice

Centers for Disease Control and Prevention (CDC). (2018). CDC: 1 in 4 US adults live with a disability. https://www.cdc.gov/media/releases/2018/p0816-disability.html

Coalición Nacional Para Latinxs con Discapacidades (CNLD). (2018, February 21). Statement on policies regarding immigrants and refugees with disabilities. http://www.latinxdisabilitycoalition.com/uploads/7/4/2/0/74201671/cnld_sign-on_immigration_refugees_disability_english.pdf

Coleman-Jensen, A., & Nord, M. (2013, May 6). Disability is an important risk factor for food insecurity. USDA Economic Research Service. https://www.ers.usda.gov/amber-waves/2013/may/disability-is-an-important-risk-factor-for-food-insecurity#:~:text=A%20number%20of%20studies%20have,or%20a%20low-quality%20diet

Davis, L. A. (2015, November 12). Youth with disabilities in the juvenile justice system: A nationwide problem. The Coalition for Juvenile Justice. https://www.juvjustice.org/blog/971

Disability Rights Education and Defense Fund (DREDF). (2020, January 3). Healthcare access. https://dredf.org/healthcare-access/

Movement Advancement Project (MAP). (2019). LGBTQ people with disabilities. https://www.lgbtmap.org/file/LGBT-People-With-Disabilities.pdf

National Coalition Against Domestic Violence (NCADV). (2018, March 13). Domestic violence and people with disabilities: What to know, why it matters, and how to help. National Coalition Against Domestic Violence. https://ncadv.org/blog/posts/domestic-violence-and-people-with-disabilities#:~:text=People%20with%20disabilities%20are%20three,crime%20against%20men%20with%20disabilities

National Council on Disability (NCD). (2012). Rocking the cradle: Ensuring the rights of parents with disabilities and their children. https://ncd.gov/sites/default/files/Documents/NCD_Parenting_508_0.pdf

R, A. (2020, July 20). The burden and consequences of self-advocacy for disabled BIPOC. Disability Visibility Project. https://disabilityvisibilityproject.com/2020/07/19/the-burden-and-consequences-of-self-advocacy-for-disabled-bipoc/

Slayter, E. (2016). Youth with disabilities in the United States child welfare system. Children and Youth Services Review, 64, 155-165. https://doi.org/10.1016/j.childyouth.2016.03.012

Substance Abuse and Mental Health Services Administration (SAMHSA). (2019). Mental and substance use disorder treatment for people with physical and cognitive disabilities (PEP19-02-00-002). https://store.samhsa.gov/sites/default/files/d7/priv/pep19-02-00-002_508_022620.pdf

Yu, T. (2019, April 23). It’s time to recognize climate change as a disability rights issue. Rooted in Rights. https://rootedinrights.org/its-time-to-recognize-climate-change-as-a-disability-rights-issue/

Social work and structural ableism: Thinking about disability and police violence

BLACK DISABLED LIVES MATTER!
BLACK DISABLED LIVES MATTER!

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.”

Although disabled people make up 1/3 of all households in the United States, that’s 61 million people or about 25% of the U.S. population, I feel as though we are so often *unseen* and *unremembered* in social work circles, our identity is an afterthought. Social worker need to begin to see with a disability lens, to remember disability as an identity. And in working with disabled people, social workers need to think about the ways that they can prevent the deaths of disabled people at the hands of police – and especially BIPoC disabled people. Disability justice advocate Haben Girma, especially, has been out front on this with respect to individual interactions with the police, but let’s think about this more structurally.

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

  • 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?

 

Language is power: Two things you need to know for practice with disabled people

language is power
Image from http://www.differenttruths.com

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.

 

 

Taking out the trash: How my client with a disability got me to recognize my own ableism

Cartoon image of a trash can with a variety of trash and garbage in and around it
It took her noticing that her client was capable of doing everyday tasks (like taking out the trash) for her to recognized her own ableism,

While studying how to be a social worker in practice with people with disabilities, I have learned that it is important to consider my own ableism. When I sat down and thought about it, I have engaged in ableism by practicing what Mackleprang and Salsgiver (2015) call compartmentalization. When I worked at a local organization for people with disabilities, I worked with a female diagnosed with Rett Syndrome. She was unable to walk or talk and was not expected to live a long or fulfilling life. At the time, I pitied this woman because she was such a sweet and caring person. As a result, I wanted her to be able to have a life where she could walk and talk. As Mackleprang and Salsgiver (2015) describe, I incorporated the medical model of disability into my work and started treating her like a child. I did not allow her to be independent even though she was capable of doing so. She had learned to function with her disability and I was ignoring this and not allowing her to live as normal of a life as she could have. She had learned to use her own form of sign language and was learning independent skills and yet I was doing everything for her.

Luckily, I was working with someone who had worked with this woman for over one year and she was able to point out my mistakes. For example, my coworker showed me that this woman could load and unload the dishwasher, set the table and take out the trash. Over time, I also learned how to interpret my client’s form of sign language. Admittedly, I was not perfect and I engaged in ableism with this woman from time to time. There was one time where I actually put this woman in a childlike state again and spoke for her, as I assumed the parental role and thought I knew what was best. At that point we had a formed a relationship so she was able to sign to me to allow her to speak. Learning to truly listen to our clients through our own ableism is an important skill to master.

In retrospect, I am thankful for the process of learning that allowed me to not engage in ableism with this woman. I am also thankful that she did not allow the stereotype that I placed on her to control how she was already functioning. She was patient with me and continued asserting her independence. This woman was strong enough to not allow me or any other person to determine how she was going to be labeled. By working with this woman, I was able to learn how to recognize when I am engaging in ableism. She has made me a better social worker.

As a social worker practitioner, it is important to consider one’s own ableism so one does not stereotype against the clients they are working with. When you are able to recognize your ableism, you will be able to actively work on not exerting your ableism on others. This also helps form a positive worker-client relationship. If you are open and honest about your ableism it will help the client be more comfortable with you and help them teach you about their disability.

Kasey A Soucy
This is Kasey A Soucy, an MSW candidate at Salem State University’s School of Social Work. (Image shows a confident White woman in a beige sweater who is smiling and standing in front of a forest)

Kasey Soucy 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 Psychology from Salem State University. She hopes to continue her career with the Department of Children and Families. Ms. Soucy chose to study social work practice with people with disabilities so she can have a better understanding with the clients she works with. She also wants to work with her agency in providing a more inclusive solution for working with people with disabilities. Ms. Soucy can be reached at k_soucy@salemstate.edu or on Twitter at @disabilitysw.

My sons, my ableism, my social work practice: Lessons learned

Social workers are deeply influenced by their home life. In order to be a reflective practitioner, I feel it is vital to take a look at myself and how my home life influences my social work practice. As part of my course on social work practice with people with disabilities, I was asked to consider my own ableism. I am sad to admit that within my own personal life, I have engaged in ableism. Ableism is defined by Mackelprang and Salsgiver (2015) as “the belief that because persons with disabilities are not typical of the non-disabled majority, they are inferior” (Mackelprang & Salsgiver, 2015, p.105).  Upon reflection, I realize that I tend to engage in ableism when I protect my children from the harsh realities of the world, even though I am not. For example, I tend to think that because my son has Autism, or that my other son has an intellectual disability, that they may not be able to handle life’s challenges.  Actually, they are quite competent in handling many situations without my added help or support.

I realize that I tend to view my children and other people with disabilities with a ‘containment’ lens.  Namely, I always feel that I am limiting the choices of those with a disability be it about going to a party, or getting part time employment.  I tend to not let my child with intellectual disabilities go to the mall with his friends, fearing that he might not pay for an item, or might get treated unfairly by a store employee if he doesn’t understand a price.  I also view my son with Autism as a child for whom college is not an option.  Honestly, I don’t know why I make these assumptions.  I now understand that they are wrong, and I am actively working on ending my ‘containment’ mothering approach. I’m now striving to provide equal opportunities to each of my children, and hoping to push them towards their highest potential.

Ableism is closely linked to the lens of the medical model of disability in which the impairment is seen as the problem, versus the social environment. Sometimes, for example, I see my children through this lens, and that is unfair to their development and self-esteem.  Specifically, when any family member hears that there is something ‘wrong’ with my child, the first thought that comes into my head relates to how I am going to ‘fix’ the problem.  In these moments, I am reacting in fear – of the unknown and of the future. Lately, I have gotten farther away from the medical model and ableist views. Realizing my children, and that other people living with disabilities are great the way they are, and don’t need to be fixed, is a very freeing feeling. I no longer feel as if I am on a race to the finish, but rather on a journey of discovery.

Learning about the social model of disability has also helped me to reflect on my own ableism. I love the work of disability studies scholar Tom Shakespeare, who describes the challenges of an overly-medicalized view of people with disabilities. He defines disability as “the disadvantage or restriction of activity caused by a contemporary social organization which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream social activities” (Shakespeare, 2002, p. 124).  This social model thinking can also be applied to how I view my children.  I am quick to blame the schools, for not helping my sons gain their skills, and educational needs fast enough.  I am quick to point out that they do not have the best equipment or the resources to help my children be fully integrated into regular classes.

This social model of thinking about disability has its downside, though.  Shakespeare notes that the world cannot be a barrier free environment and that it isn’t possible to have a barrier free world for everyone.  In this vein, I engaged in ableism with my children when I do not let them explore and challenge environments that I cannot fix for them.  School is hard for my son with intellectual disabilities.  Sometimes life is just hard.  If I continue to blame society, blame the system, or even blame my children for their struggles, then I am doing them a disservice and wasting valuable time not enjoying the uniqueness and abilities of the people around me. All of this has implications for how I practice as a social worker!

Mackelprang, R. & Salsgiver, R.  (2015). Disability: A diversity model approach in human service practice, 3rd edition.  New York: Lyceum Books.

Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.

Erica Sarro
Erica Sarro, MSW Candidate at Salem State University (Note for Screenreaders: Photo depicts a young white woman with dark hair, sitting in a car)

Erica Sarro 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 Salem State University. She hopes to continue her career in policy-related macro social work. Mrs. Sarro chose to study social work practice with people with disabilities in order to become a better advocate for equal rights for people with disabilities. Mrs. Sarro can be reached at e_sarro@salemstate.edu. Her blog posts are published at www.disabilitysocialwork and you can Tweet her at @disabilitysw.

 

Containing schizophrenia: Confronting my ableism towards family members

In trying to understand my own ableism, I realize that I have not done a great deal of professional work with individuals with disabilities. Therefore, I’ll write a bit about the ableism I have engaged in with both my mom and brother as they both have a diagnosis of paranoid schizophrenia. My mom has had a disability since before I was born, and my brother’s disability was triggered 7 years ago. While I have made a great deal of improvement in terms of trying to keep ableism out of our family dynamics, I am still not perfect, but I am certainly trying.

As both the daughter and sister of people with paranoid schizophrenia, I have definitely engaged in, and still unconsciously engage in, ableism, that is, the “belief that because persons with disabilities are not typical of the non-disabled majority” (Mackelprang & Salsgiver, 2015, p. 105).

One type of ableism is containment, or “the practice of limiting the choices, exposure, and life experience of disabled persons, as well as opportunities for disabled persons to fully participate in society.” Looking back, I have discouraged my family members from trying to attain jobs, so they would not have to deal with the sadness or embarrassment that had accompanied the loss of previous jobs. I have also done this in order to prevent any disturbances with social assistance services that were in place.

The notion of expendability is also a form of ableism. Expendability is “the belief that persons with disabilities are expendable” (Mackelprang & Salsgiver, 2015, p. 106). I have considered avoiding childbirth out of fear that I would pass the genes for paranoid schizophrenia on to my offspring.

I have also engaged in the form of ableism known as ‘compartmentalization,’ and have, “imposed on them the sick role that prevents persons with disabilities from learning the skills necessary for economic survival and advancement”, when I tried to create a budget for their incomes to avoid an end-of-the-month lapse in funds (Mackelprang & Salsgiver, 2015, p. 115).

And I also admit that I have blamed the victim, which can be described as “the process in which those in authority or positions of respect fault injured parties for externally imposed problems” (Mackelprang & Salsgiver, 2015, p. 116). This has manifested when I have taken out my frustration on the recreational drug use that triggered both of their illnesses, but certainly did not cause their paranoid schizophrenia.

These are just a few of examples of my ableist behaviors that took place before I gained much-needed insight on ableism and disempowerment in my social work practice with people with disabilities course. I think these examples of ableism also provide another justification for the importance of seeing things through an intersectionality lens as well as the connection between poverty and disability. Much of the oppressive ableism that I have engaged in was perpetuated by the need for my family to stay afloat financially, and much of my oppressive anger was coming from a lack of needed resources. As an older and (hopefully) more mature person I can see that my anger was being geared in the wrong the direction.

Throughout my time in this social work course, my professor has worked to normalize the difficulty we face in confronting our own ableism. This is an essential task when you are taking such a critical stance on how your good intentions might have been more oppressive than helpful in social work practice. We, as social workers, know that using confrontation skills before a client is ready can cause the client to shut down. I argue that the same is true for beginning to recognize our own ableism with our clients and with our families. Constant reflection, both as family members and a practitioners, is a tool that pushes us learn from our experiences and generate the self-compassion needed to best confront the oppressions that society has built for our family, friends, and clients.

Mackelprang, R. & Salsgiver, R. (1999). Disability: A diversity model approach in human

service practice, 3rd edition. New York: Lyceum Books.

 

accessibility icon
This anonymous author is an M.S.W. candidate at Salem State University’s School of Social Work in Salem, MA.

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 http://www.disabilitysocialwork.blog.

Undoing “speaking for” at the doctor’s office: One social worker’s efforts to fight ableism

YAI IDD doctor
A young man who is smiling sits in a doctor’s office. The doctor, in a white coat, puts her hand on the young man’s back. (Image credit: https://www.yai.org)

By Daniel Fraser, M.S.W. Candidate

Salem State University

One of my duties as a group home worker certified by the Medication Administration Program (MAP) is to accompany my clients with intellectual disabilities to doctor’s appointments. My clients often state that they feel more comfortable having me go into the examination room with them during such appointments. In my experience, nurses and doctors most often direct their questions to me rather than speaking directly to the client in the room. While in these appointments with my clients, I now realize that most of the time I take part in ableism, by answering any questions posed by the nurses or doctors, instead of referring them to my clients. There are times when I am aware of this happening, yet, I still answer the questions. However, there are also times when I repeat the question asked of me by the nurse or doctor, to my clients, to have them answer the question for themselves.

After reading more about ableism, and the different life experiences explained by the authors of Disability: A Diversity Model Approach in Human Service Practice (Mackelprang & Salsgiver, 2015), I am more aware that my actions in the doctor’s office with my clients is a form of ableism. As such, I am playing a part in the compartmentalization of my clients.  It is known that those in the medical profession often tend to compartmentalize persons with disabilities, and not recognize people with disabilities as having the same basic human rights as they have, rather they tend to look down on people with disabilities, almost treating them as someone who is less of a person than them (Mackelprang & Salsgiver, 2015).

Looking back, I can now also see this was something I noticed when I first became certified to administer medications.  The very first time I opened the medication book for my clients, I saw the list of medications they had to take, and it seemed to be endless. I remember thinking to myself when I saw the list, “there is no way one person should have to take such a laundry list of medications,” along with thinking, “I wonder how many of these medications counter-balance one another, cancelling out their effectiveness.” Since I have learned about it, I can now see these long lists of medications as a possible result of the application of the medical model of disability (Mackelprang & Salsgiver, 2015). It may be controversial, but it is my belief that my clients are likely only on these medications as a way to either attempt to cure their disabilities, or to speed up the euthanizing process.

Self-awareness of ableism is important, because as social workers, we work toward providing ways for people with disabilities to live their lives as independently as possible. By taking part in ableism, we are continuing to carry on this stigma about people with disabilities, that they are not competent enough to be able to care for themselves, and give their own answers to those in the medical profession.

 Daniel Fraser is a candidate for the degree of Masters in Social Work at Salem State University’s School of Social Work. He holds a B.A. in Social Work from Salem State University. He hopes to do clinical work with students who have varying degrees of cognitive and intellectual disabilities with his career. Mr. Fraser has always enjoyed helping people out, and since joining his current place of employment, has really found his niche, where he can help people, and advocate for independence within the disability community. Mr. Fraser can be reached at d_fraser2@salemstate.edu.  Mr. Fraser can also be reached via social media at @disabilitysw on Twitter.