What Do You Know About Disability Cultural Competence?

Recently, I had the opportunity to give a webinar on disability cultural competence to social service workers, but was met with many blank stares. As a disabled social worker myself, I often notice that the disability community is not recognized as a cultural group. Disability is also not considered as a social identity in diversity considerations, despite the ways the community feels about it. Frankly, our field has a long way to go when it comes to developing disability cultural competence. Let’s see if we can change that.

Why the We Need to Prioritize the Disability Community

You may be asking yourself, why all the focus on disability? Well, the disability community comprises 26 percent of the adult U.S. population – that’s one in four Americans according to the Centers for Disease Control. Among children under the age of 18, estimates suggest that 4.3 percent of the population is disabled according to the U.S. Census from 2019. This means that social services workers are interacting with the disability community all over! It’s also important to note that disability transcends race, ethnicity, gender and other social identities, as seen in the graphic below (courtesy of Courtney-Long, Romano, Carroll, et al., 2017). So we need to remember to be intersectional in our  practice – these are not siloed communities.

Courtesy of Courtney-Long, Romano, Carroll, et al., 2017

Importance of Disability Identity

I’d like to transition now to talking about the importance of having a disability identity. Some people identify as disabled from a cultural perspective. Some people are not even aware that this is an option and you can open their eyes to the world of disability as a resource for them. In other words, for some, this is a missed opportunity to connect to a supportive network. For others, it’s a choice not to identify as disabled either due to stigma, internalized ableism or other beliefs. The idea is that developing a strong disability identity is super helpful with your long-term well-being. And in order to do this, you have to both connect with the disability community and with disability culture. So what is that?

What is Disability Culture?

 

In short, disability culture is the “sum total of behaviors, beliefs, ways of living, & material artifacts that are unique to persons affected by disability.” It’s essential for social service workers to be tuned in to disability culture so they can leverage it to connect with their clients. And let’s be clear, disability culture does NOT consist of disability service programs. Where we really see disability culture come alive is on social media sites, such as Twitter and Instagram. You can follow some of the major disability culture hashtags to see the dialogues and debates that are hot in our community right now, such as: #DisabilityTwitter; #DisabilityVisability; #DisabilityAwareness; #IdentityFirst; #DisabilityLife; #Spoonie,#SpoonieLife, and more.

You may notice that the last two hashtags included the word “spoonie.” This derives from “spoon theory,” which is an actual theory based on a metaphor about how much mental and physical energy a person has to accomplish their activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The disability community talks about how many “spoons” they have as a unit of measurement of energy – and sometimes refers to themselves as spoonies. Please note that in teaching you this, I am helping you to develop your disability cultural competence.

How Build Disability Cultural Competence

Other ways to build up your disability cultural competence are to check out the Disability Visibility Project, which tells the stories of diverse members of the community in wonderful ways. And there are a range of organizations, such as Sins Invalid, which founded the disability justice movement. You can also read the 10 principles of that movement in this short document. This will help you to tune in to the disability pride movement. We have a pride month and a pride flag too, it happens in July.

When it comes to engaging in disability competent practice, we need to develop knowledge about disability culture and disability history. We can also consider taking the following steps to round out this competence:

First, we need to examine our own attitudes about disability and engage in reflective practice around that. You can consider your own implicit bias about the disability community through Harvard University’s Project Implicit test about ableism, or through social worker Vilissa Thompson’s guide to checking your own ableism.

Second, developing disability cultural competence over time also includes a careful look at the terminology we are using and respecting disabled people’s choice of identity-first language in many cases. You can read more about that here and throughout that site. The Harvard Business Review also has a thoughtful essay on why you need to stop using particular words and phrases. It’s a great resource and helpful read for many.

Third, we also need to think respectfully about disability etiquette and how ideas play out in different parts of the disability community. One should presume competence about us – all of us! We ask that you respect our bodily autonomy, speak to the person and not their companion/interpreter, ask before you help, be sensitive about physical contact/equipment contact, don’t make assumptions about capacity, listen to us, don’t assume you know better and if you are in doubt about what to do, ask! Writer Andrew Purlang sums up his disability etiquette request as follows:

  • Don’t be afraid to notice, mention, or ask about a person’s disability when it’s relevant — but don’t go out of your way!
  • Offer to help, but make sure to listen to their response, respect their answer, & follow their directions
  • Don’t tell a disabled person about how they should think about or talk about their own disability
  • Don’t give unsolicited medical, emotional, or practical advice
  • Don’t make a disabled person responsible for managing your feelings about their disability, or for your education on disability issues
  • If you make a mistake, just say you’re sorry and move on. Don’t try to argue that you were right all along.

Now What?

Taken together, these steps, learning disability culture, and examining our own attitudes about disability, go a long way towards the development of disability cultural competence. But none of it will do any good if we are not fighting for disability access and disability inclusion, which are central issues for the disability community. Many people think that issues of access were solved by the passage of the Americans with Disabilities Act of 1990. But the implementation of that law is fraught and embattled, and there is lots of work to be done on the access front. Take a look at these simple guides below. They will go a long way in helping to engage the disability community and making us feel welcome! Above all, remember our movement’s rallying cry, “nothing about us, without us!”

Website Accessibility

Accessible Social Media Guide

Meeting Accessibility

Webinar Accessibility

Public Event Accessibility

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

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

Taboo-Nature

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

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

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

The Institutional Deficit

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

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

Deeper Issues

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

Why This Matters to Social Workers

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

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

How Disability Culture Can Inform Mentoring Girls with Disabilities

Photo Credit: Big Sister Association

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 also 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 into 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 staff members’ 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!

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