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

When Frank Kilpatrick set out to convince more younger people to get the jab, he knew he’d have to overcome several roadblocks. One, young people tend to feel invincible, and thus somehow unaffected by the COVID-19 virus. Two, they aren’t moved by data that shows the benefits of vaccination. Three, they tend not to watch TV—especially the news—like older generations do. And so he and his team came up with a creative solution: Reach them through music.

“Music is a kind of language for young people,” says Kilpatrick, who has come together with a team of concerned citizens via the non-profit organization Ribbons for Research to figure out what will convince more Americans to get vaccinated. “It plays a huge role in their search for identity. It’s a powerful form of self-expression. It connects them to their tribe. So we figured, why not speak their language?”

He and his team realized the Gen Z (ages 18-24) and Millennial (ages 25-40) cohorts are vaccinated at low rates similar to those of rural Southern populations. To reach them, Kilpatrick’s team developed a focused PSA initiative with the theme “COVID-19 Is Not a Hoax.” The centerpiece of the campaign is a music single and corresponding music video titled “COVID-19 Is Hell.” It features the singer Rayko.

Kilpatrick urges media outlets to view, download, and share the single by clicking here, and asks television and radio stations to place it into high-visibility rotation in their schedules.

“The video is cool and fun and even sexy, yet carries a serious message,” says Kilpatrick. “By bringing a contemporary pop music vibe together with engaging images, we’re getting that message across in a way young people will be receptive to—all we need is the help of media outlets to share it with their audiences.”

The music video is an extension of Ribbons for Research’s initial public service announcement (PSA) campaign titled Shoulda Got the Shot. These video and radio segments feature portrayals and testimonials from real people who have been seriously ill or lost a loved one due to COVID-19.

“The idea behind the Shoulda Got the Shot PSAs and also this newest music video is to try a heartfelt, emotional, non-preachy, politically neutral approach we believe will resonate and move these groups to take action,” says Kilpatrick.

His collaborators on the projects include director Eric Mittleman, producer Linda Kilpatrick, and associate producer Rayko Takahashi.

To understand more about why Kilpatrick and team have decided to devote so much time and so many resources to creating this PSA project, here is a quick mini-interview with him:

Q: Who does the Shoulda Got the Shot campaign target?

A: We’re aiming this campaign at various underserved populations: politically polarized, lower income, minority, and rural audiences. We have a similar social media strategy aimed at the younger “party hearty” populations that feel invincible.

Q: Why is it so urgent?

A: Currently, although the numbers have improved over the past month or so, the U.S. vaccination rate isn’t where it should be. Quite simply, the more holdouts we can convince to get the shot, the more lives we’ll save.

Q: What makes this campaign different?

A: Our Shoulda Got the Shot PSA campaign doesn’t lecture its audience. It isn’t a blatant endorsement by politicians and scientists. It doesn’t tell people what to think. Our approach is based on the most proven type of human persuasion: human connection. These testimonials are raw and emotional and real. People will be more likely to trust these spokespeople in a way that they’d never trust a politician or scientist. These are people who look like them.

I mean, you can feel Martha’s anguish when her voice breaks as she talks about how her daddy died from a hole in his lung caused by COVID-19. When she goes on to encourage others to get vaccinated, it’s clear that it comes from a genuine desire to prevent suffering. These spots are incredibly compelling.

Q: So…why you? What drove you to launch this campaign?

A: First, this is a cause I deeply care about. I feel much the same way about it that I felt about the Stay Alive suicide prevention documentary film I produced 18 months ago. But also, thanks to my work in the healthcare communications field, I have many years of experience in producing these kinds of permission-based approaches that feature an appeal to community agreement. I know from experience this is a powerful strategy.

Q: How can others help?

A: Please…if you work with a TV, cable, or radio station, or have influence with any other media outlet, air these PSAs and/or the “COVID-19 Is Hell” single and video. Share this lifesaving content with your community. Call (424) 262-5570 to get copies of the spots delivered to you, or visit www.ribbonsforresearchvideo.org and www.ribbonsforresearch.org for a preview and for more information.

“We really have a lot of hope for this campaign,” adds Kilpatrick. “If we all join together to share these vital messages, we can help improve the numbers in under-vaccinated communities across the U.S. We can save lives—perhaps ultimately even our own.”