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

New Analysis: More U.S. Adults Identify as Disabled; Ethnic and Socioeconomic Disparities Persist

A new analysis led by Johns Hopkins Medicine researchers finds that the number of U.S. adults who report they have a disability is 27%, representing 67 million adults, an increase of 1% since the data were last analyzed in 2016. In this new study, which used data collected in 2019, before the COVID-19 pandemic, the researchers found a wide array of disparities between socioeconomic and demographic factors that persists among those who identify as disabled and those who do not.

“To reduce ableism and create more inclusive communities, our country must be equipped with data on the prevalence of disabilities and who is most impacted by them,” says Bonnielin Swenor, Ph.D., M.P.H., director of the Johns Hopkins Disability Health Research Center and associate professor of ophthalmology at the Johns Hopkins University School of Medicine and Wilmer Eye Institute.

Swenor and her research team analyzed survey data from the Centers for Disease Control and Prevention’s 2019 Behavioral Risk Factor Surveillance System, a collection of health and behavior information from annual telephone surveys of more than 400,000 U.S. adults.

Results of the analysis were published Oct. 21 in JAMA Network Open.

Approximately 27% of American adults reported a disability. When compared with the U.S. adult population, this represents 67 million adults. An additional 6 million people reported a disability since data on disability prevalence were analyzed and reported in 2016.

In the current study, approximately 12% of American adults reported more than one disability. Mobility was the most often reported disability type, followed by cognitive/mental, independent living (requiring help for daily tasks and outings), hearing, vision, and self-care (needing help with bathing, dressing and other personal care tasks).

In addition, the researchers analyzed socioeconomic and demographic data to better understand the prevalence of disability across intersecting groups.

“Developing effective measures and policies to include people with disabilities in all aspects of life needs to account for the variability in how people among different ethnic, socioeconomic, demographic and geographic groups experience disability,” says Swenor. “With robust data, we can strengthen the foundation of our knowledge about disability and develop tangible solutions.”

The survey data showed that, compared with adults without a disability, disabled adults were more likely to be older, female, Hispanic, have less than a high school education, have low income, be unemployed, and be bisexual, transgender or gender nonconforming. Digging deeper, the team found differences in disability prevalence based on sociodemographic groups. For example, Black females had a higher prevalence of disability than females of other races, and Black adults identifying as gay or bisexual had a lower prevalence of disability compared with gay or bisexual adults of other races.

Swenor and the research team note that an aging population and other factors may contribute to the increase in reported disability. The data include information from before the COVID-19 pandemic, and Swenor says there may be an increase in people reporting a disability resulting from long-term symptoms of COVID-19.

The research team aims to use these data to continue studying the experiences of disabled populations, including identifying and finding support and resources for people with disabilities and ascertaining the capabilities of schools and employers in supporting disabled communities.

In addition to Swenor, researchers who contributed to the report include Jessica Campanile, Jennifer Deal, Ph.D., Nicholas Reed, Au.D., and Varshini Varadaraj, M.D., M.P.H.

What “Bachelor in Paradise” Can Teach us About Empowering the Disability Community

Are you a fan of “Bachelor in Paradise?” Whether you realize it or not, this season of the “Bachelor” franchise spinoff took on the topic of disability empowerment. Which is not exactly an expected topic for mainstream television. For years, the “Bachelor” series has been criticized for featuring primarily White contestants, and has worked to diversify the races and ethnicities of the people they draw on the show. But what about people from the disability community or people who identify as Deaf or hard-of-hearing?

Being disabled or Deaf or hard of hearing are also social identities in American culture – identities that should not be overlooked in the show’s representation. These communities represent what some refer to as the largest minority community in the United States at 26 percent of the U.S. population according to the Centers for Disease Control and Prevention. In the following, we’ll discuss more about why this year’s “Bachelor in Paradise” was so significant and what that may mean for social workers.

Introducing Abigail

A few years ago, we did have Sarah Herron on the show, a woman with a physical disability, although her presence was short-lived. But this season, the very first person down the stairs to the Mexican beachfront hacienda was Abigail Heringer, a 26 year-old woman who identifies as Deaf due to congenital hearing loss from birth. She received cochlear implants at the age of two but does consider herself disabled due to her hearing impairment and loss. Abigail was a central figure in this summer’s Bachelor in Paradise due to her romance with Noah Erb.

It was refreshing to see a disabled person in a romantic relationship given the history our culture has of thinking that disabled folks are asexual, incapable of having sex or in need of being protected from any kind of sexual contact. Abigail and Noah’s relationship has played out on television screens across Bachelor Nation – from their devastating breakup at the show’s conclusion to their rekindled romance announced subtly on social media later. This demonstrates that members of the disability community have relationships too, and that this is 100% normative behavior, with breakups, glitches, awkwardness, kissing and all!

The Dignity of Risk

So how does this relate to social work practice? One of the central tenets of good disability social work is how we need to honor the concept of the dignity of risk. This is the idea that everyone can learn from everyday risks. Central to honoring the dignity of risk is respecting an individual’s autonomy and self-determination to make choices. Also important, is the right for our clients to make choices even if social workers or other professionals in the person’s life feel that they could endanger the decision-maker in question. In order to respect a person’s dignity of risk, one should provide intermittent support even if others do not approve of the choice.

As there is inherent dignity in the experience of everyday risk, this concept suggests that limiting a disabled person’s ability to make even a risky choice, or limiting their access to the learning that comes along with a potentially emotionally painful risk, such as dating, does not foster overall wellness in the long run. Abigail, from this year’s “Bachelor in Paradise” is a wonderful example of the kind of empowerment needed, rather than sheltering one from risks in life.

Robert Perske famously wrote:

“Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become…”

Arguably, the dignity of risk may be among the most challenging tenets for social workers to embrace in their practice, but it is vital to accept given its intersection with self-determination. The dignity of risk also involves learning about the part of life that involves sexual and romantic relationships. Social workers need to remember to talk to their clients about sexuality in a developmentally appropriate manner. It is important not to cut off conversations about this topic, or to skirt the subject when it comes up. We must also support our clients in exploring how to engage in healthy relationships when they have the opportunities to be in them.

It’s wonderful that Abigail Heringer can be a model in reminding us of this important lesson for empowerment-oriented disability social work. One that embraces the dignity of risk for those who wish to date! With that being said, here’s to Noah and Abigail’s relationship!

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.

Ramp Your Voice: New Organization Filling the Disability Advocacy Gap

by Vilissa K. Thompson, LMSW

Your Voice, Advocacy 1Ramp Your Voice! is a new organization created to fill the gap in how disability advocacy currently exists in America.  Ramp Your Voice! seeks to ensure that minorities with disabilities have a place at the table when disability issues and life experiences are discussed and shared.  The establishment of Ramp Your Voice! aligns with my macro social work ambitions of sharing and educating the public about the barriers, issues, challenges, and progress of people with disabilities.

Numbers Don’t Lie

Failure to recognize  minorities with disabilities in the disability rights advocacy movement is unacceptable, given that there are more minorities with disabilities in America aged 21-64 than those of European descent.  According to Disability Statistics data collection for 2011, there were over 37.3 million individuals in America with some form of a disability.  Of that number, only 10.3% of individuals aged 21-64 identified as white/Caucasian, compared to 54.1% who identified as being a member of a minority group or of some other race.

The Danger of Ignoring the Voices of Minorities with Disabilities

Allowing minorities with disabilities to remain invisible within both the subgroup and society is truly disempowering, and can no longer be the standard.  In order for society to truly understand the necessary changes needed to improve the quality of life for people with disabilities, the stories and voices of minorities with disabilities has to be prominent in the movement.  Minorities with disabilities have just as much to contribute in the fight for equality as their white counterparts.  Having this unique focus in promoting self-advocacy among minorities with disabilities is what sets Ramp Your Voice! apart from other disability advocacy organizations.

Why Ramp Your Voice! Matters

My hope for Ramp Your Voice! is to share the stories and voices of ALL people with disabilities, regardless of their ethnic background.  Ramp Your Voice! will be a game changer in making this happen.  Empowering minorities with disabilities hits home for me since I am a proud woman of color with a disability.  I aim to share my own life story with those who have a vested interest in learning what it is like to live with a disability.  Becoming a consultant on disability rights issues is another means for me to become a prominent spokesperson in the disability movement.

I realized that I could not wait for someone to approach me about sharing my knowledge and experiences.  Instead, I have taken action in creating my own opportunity to share my story, and provide a platform for others to do the same.

How You Can Become a Part of the Ramp Your Voice! Disability Advocacy Movement

If you or someone you know would be interested in sharing his or her life experiences as a person with a disability, please review the “Calling All Self-Advocates and Allies” page on the website.  Interested persons and organizations may contact me via email, (Vilissa@rampyourvoice.com), or through the website’s contact page.  I am eager to write about individuals, as well as organizations working hard to improve the quality of life of those in the disability community.

If you want to support to this new movement in disability advocacy, visit the website, spread the word to others, and follow me on my Facebook Fan Page, Twitter, Google+, and Pinterest.  

RYV Words Only Logo 1I am prepared to “ramp” my voice for change; what are you willing to do?

 

You must be the change you wish to see in the world.

– Mahatma Gandhi

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