Beyond inclusion: Creating affirming classrooms for d/Deaf and hard-0f-hearing social work students

Elspeth Slayter, MSW, MA, PhD, Salem State University

Cate Thomas, BSW, GradCertLearn&TeachHigherEd, GradDipPA, MPAdmin, PhD, Charles Sturt University

We often have d/Deaf^[1] and hard-of-hearing students in our university student bodies, but they can, at times, feel excluded from their educational environments. Therefore, it is important for faculty to create d/Deaf-affirming spaces as opposed to just providing disability inclusion. We need to recognize that hearing access is an implicit requirement for classroom-based learning. Most professors don’t consider how much hearing access matters until they are working with a d/Deaf or hard-of-hearing student. So, what barriers do d/Deaf and hard-of-hearing students face, and how can we best prepare to ameliorate them?

Let’s start with classroom interactions. Once in the classroom, the most obvious issue is the student’s use of an interpreter^[2]. One or two interpreters may be present to support the student, depending on the length of the class session. Some students speak American Sign Language, but there are many other languages, such as Black Sign Language and Brazilian Sign Language. Not all interpreters are fluent in all of these languages. Students may have American Sign Language as a second language. Regardless of language, all communications with the student should be directed directly to the student, and not to the interpreter, out of respect for the student. One issue that comes up from time to time is the way that d/Deaf and hard-of-hearing students participate in classroom discussions. As they cannot hear exactly when another student starts or stops talking, they may enter into the conversation in a manner that may feel abrupt. Additionally, d/Deaf and hard-of-hearing students may not engage at all by virtue of space/positioning, because they are not aware of what is occurring in the classroom. This is just part of the territory that needs to be gotten used to. In our experience, d/Deaf and hard-of hearing students often face social problems in the classroom as well, such as lack of connection with other students, disability microaggressions, and active ableism. This is especially problematic during class breaks when they are ignored and in small group work. Professors can model d/Deaf/hard-of-hearing affirming behavior for the rest of the classroom, while honoring the principles of disability etiquette (Pulrang, 2020).

Another central area for fostering a d/Deaf and hard-of-hearing affirming space relates to faculty positioning in the classroom. If d/Deaf and hard-of-hearing people are lip-reading, for example, they need to be able to see the faculty member’s face when they are at the board, or walking around the room. Faculty need to be attentive to this. This may mean the faculty member making the use of technology and streaming themselves to desktops by way of a portable head mounted camera and the use of other affordances.  Videos and screencasts are also an issue. All videos and screencasts used in class need to use closed captions. When recording lectures for the flipped classroom technique, for example, it is important to make using captions a consistent habit. Websites for assignments that use videos may often be inaccessible if they do not provide closed captions or a transcript – this needs to be assessed by the instructor ahead of time so that accommodations can be made. These are vitally important to ensure a positive student experience and engagement on all levels.

In summary, professors should be aware of hearing access barriers and act on them ahead of time, taking initiative in creating d/Deaf and hard-of-hearing affirming spaces, including when guest lecturers are present. Asking d/Deaf and hard-of-hearing students “what has worked for you in the past to make this class work?” is a great place to start. Communicating with Disability Services about how to best accommodate an individual is vital, as is being open to constructive feedback. Central to this work is being self-aware of unintended ableist attitudes and behaviors. d/Deaf pride is a well-documented phenomenon, and many, but not all, are happy not to be ‘fixed’ with cochlear implants. Most importantly, d/Deaf and hard-of-hearing students don’t want to be anyone’s inspiration, they just want to fit in. Please take this information and use it to create a universally-designed classroom for the next time you have a d/Deaf or hard-of-hearing student in your roster! From a structural and systemic viewpoint, universal curricula and pedagogical design should be a common denominator for all students and based on authentic co-design with students.

Pulrang, A. (January 17, 2020). It’s time for a reimagining of disability etiquette. Forbes. https://www.forbes.com/sites/andrewpulrang/2020/01/17/its-time-for-a-reimagining-of-disability-etiquette/?sh=4f99cb33d6d8

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^[1] According to Carol Padden and Tom Humphries, in Deaf in America: Voices from a Culture (1988): “We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture.  The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society.  We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.”

^[2] Interpreting and translating are related but are different activities. Interpreters work between spoken language and sign language. Translators work from text into sign language.

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“School sucks for a blind student:” Creating disability-affirming classrooms for blind students

Ben Chase, BSW Candidate and Elspeth Slayter, MSW, MA, PhD

Recently, Ben, a legally blind social work student with partial visual impairment wrote to Elspeth, saying “school sucks for a blind student at Salem State.” With a 4.0 grade point average and consistently positive attitude towards learning, Ben helped me to learn about the experiences leading to this statement. Honoring the disability justice principle that disabled people are the best experts on their lives, let us learn from Ben’s experience so we can do better at moving beyond creating disability-inclusive spaces, to fostering disability-affirming spaces. Visual access is an implicit requirement for learning. Most educators don’t consider how much visual access matters until they accommodate a blind student. Even then, they tend to underestimate their access needs. So, what barriers do blind students face?

Let’s start with the classroom space. What is the setup of the classroom, are there rolling desks that are never in the same place? Where are students sitting and what desks are taken? How many students are in the room, and who are they? Where is the door? Is there an unspoken culture about everyone sitting in the same seat? Will someone accidentally sit in an awkward place or without socially acceptable proximity to others due to lack of depth perception? Once in the classroom, depending on the student’s vision, there are often social problems, such as lack of connection with other students, disability microaggressions, and active ableism. 

Lighting is also a vital issue for blind students in terms of brightness, color, and placement (overhead vs. lamp). Ben reports “My eyes are light-sensitive, fluorescent overhead lights create a glare. This is why I wear hats on campus. Turning the lights on after they’ve been off for a while is incredibly painful if I’m not aware when it’s going to happen, so I can cover my eyes.”  A number of blind students report eye fatigue after straining/using vision for a while, requiring them to need to take breaks due to the pain they are experiencing. Another student reports “professors never handle this well in my experience, one boldly told me I could just leave if I didn’t feel like being in class versus giving an excuse.”

The colors and writing styles used in classroom presentations also matter in creating affirming spaces vis-à-vis writing on the board (cursive vs. print, light colors) or the presentation of non-accessibly designed slides. All images on slides need to have an ‘alt text’ description (right click the image to add that) so that students can access the image. If you included the image for your students, it was meant to facilitate their learning, so why wouldn’t you want all students to access it? Also, showing videos without audio description enabled often leaves blind students confused because much of the context in the video is accessed visually. Audio descriptions are a similar concept to closed captions except they’re verbal. They only provide brief descriptions of key visual contexts that are essential to know for the storyline. Imagine a 5 minute scene montage with a musical overlay only. There’s no way for blind people to know what’s happening there.

Digital materials and handouts are also areas to consider. For some blind students with accommodations, handouts should be sent to blind students ahead of time so that they can read the documents with their screen readers or screen magnifiers or other assistive technology. They may be unable to do this right in the classroom. Anything requiring handouts may be a problem, such as an attendance sheet, as completely blind people cannot always write, and partially blind people may only read written material with dark markers. One common problem reported on the use of in-class handouts is that faculty take a photo of a handout with their smartphone and email it to their blind students, not understanding that screen readers cannot read the text in a photo. Digital materials, especially PDF files, need to be in the format that screen readers can access, not in photo format. Websites for assignments are often inaccessible or difficult to navigate for screen readers and or another assistive technology. Website navigation issues could result in an assignment taking three times the amount of time intended when a screen reader is involved.

Overall, professors should be aware of visual access barriers and act on them ahead of time, taking initiative in creating disability-affirming spaces, including when guest lecturers are present. This is an aspect of disability etiquette. Asking blind students “what has worked for you in the past?” is a great place to start. Communicating with Disability Services about how to best accommodate an individual is vital, as is being open to constructive feedback. Central to this work is being self-aware of unintended ableist attitudes and behaviors. Disability pride movements are common, and many blind students are happy to be part of disability culture without being ‘fixed.’ Most importantly, blind students don’t want to be anyone’s inspiration, they just want to fit in.

So let’s act on all of this wisdom from our students. As educator Dr. bell hooks once said, “what we do is more important than what we say or what we say we believe.” Let’s do better for blind students, so another student doesn’t come to us saying that school sucks for them at Salem State.

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. 

#CrippingSocialWork: Why Disability is a Social Work Issue

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: 

• Child welfare (children) (Slayter, 2016)
• Child welfare (parents) (NCD, 2012)
• Criminal justice (ACLU, 2020) 
• Education (The Arc [a])
• Environmental justice (Yu, 2019)
• Food security (Coleman-Jensen & Nord, 2013)
• Healthcare (DREDF, 2020)
• Housing (The Arc [b])
• Immigration (CNLD, 2018)
• Intimate partner violence (NCADV, 2018)
• Juvenile justice (Davis, 2015)
• LGBTQ+ rights (MAP, 2019)
• Mental health and substance use disorder treatment (SAMHSA, 2019)
• Racial justice (R, 2020)

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/

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

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.

 

 

Preparing for Hurricane Irma: What social workers need to know about people with disabilities

Remember the spectrum of disabilities as you prepare for Hurricane Irma (Image credit: The Feminist Wire)

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.

Why I love Gimpgirl.com: How Disability culture can inform mentoring girls with disabilities

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 e_chepulis@salemstate.edu. This article reflects the opinions of Ms. Chepulis, and not the Big Sister Association of Greater Boston.

 

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

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.

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, 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.