Why Disability Should Be Part of the Diversity, Equity and Inclusion Conversation
I feel that our society is making great strides in discussing and embracing diversity and promoting equity and inclusion in many areas. However, I think that disability is often left out of the discussion. I have gained a better understanding about how this lack of recognition impacts people with disabilities through my work as the founder of Including You.
I’ve learned just how lonely having a disability can be. One boy in my camp who has autism said to me, “Daisy, I have never had a best friend. No one wants to be my friend.” That broke my heart—and of course I invited him to be part of Including You.
I’ve heard the same thing from parents who write to me via email or social media seeking a friend for their kids. I can tell how much they love their children and are sad that they are missing out on the sleepovers, playdates, best friends and buddies that so many take for granted. And they are missing out on it because disability is a difference not everyone has learned to embrace.
I was lucky to spend many years in an ICT classroom, in an environment where kids with disabilities were mixed with kids without them, and from the time I was little, I and many of my friends learned to appreciate everyone’s differences, understand where they were coming from, and reach out to them. It was only as I got older that some of my peers began acting cruelly to those with disabilities. That’s one of the reasons I started Including You.
I also learned from my Including You mentee and friend, Laura, an 18-year-old aspiring rapper with Down Syndrome, just how much words can hurt. Laura and I usually just hang out, crafting, chatting, baking or doing other fun things. But for Down Syndrome Awareness Month, I interviewed her for this blog. She told me:
“Well, some people don’t know that we’re people. They think that we’re objects. They think they can do whatever they want. Like, the “R” word? They think it’s a regular word they can use, but it’s really not. It’s insulting to me and people like me, and we don’t like it and I really wish people would stop using that word. It really impacts our lives and the way we think, talk and act. Even though we may not be like them, it doesn’t mean that they have the right to hurt our feelings and slander us as though we’re objects lying on the street.”
I thought about it. I know that I’ve heard classmates and others say the “R” word, just like I’ve heard words like “crippled” or “gimp” or things like that. And I’m not sure that even well-meaning people always know to object to that. Because disability is not part of the diversity, equity and inclusion discussion.
Likewise, I don’t think we all know how recently those with disabilities gained basic civil rights, and what they had to overcome to achieve this. I have also had the honor of interviewing Bernard Carabello, the founder of the disability self-advocacy movement, as part of my efforts to shine a light on disability advocacy through Including You. Bernard was born in 1950 with cerebral palsy but was misdiagnosed as being developmentally disabled. In 1954 his mother placed him in Willowbrook State School, an institution for children and adults with developmental disabilities. Willowbrook was understaffed, overcrowded and underfunded, and its residents suffered abuse, disease, were subjected to experiments, denied an education and at times even clothing.
A doctor there started raising awareness of the conditions at Willowbrook, and he was fired. He kept a key to the ward where Bernard was though, and brought journalists into the institution to see what was happening. Bernard was interviewed at Willowbook and later he was snuck out for other interviews. Media coverage caused public outrage. Bernard was released when he was 21, and finally, in 1987, Willowbrook was closed.
After his release, Bernard continued to fight for disability rights and founded the Self-Advocacy Association of New York State. Bernard worked to close many institutions like Willowbrook, and his advocacy helped pave the way for many laws, including, ultimately, the Americans with Disabilities Act. But we don’t always learn about this in school.
And even though the ADA has done so much, disability is still not a big enough part of the discussion when talking about employment rights. As part of what I do as a Board Member of Être, a girls mentorship organization, I attended a Women & Worth Summit lead by Worth Magazine. I asked the panelists of ‘Rebuilding With Purpose to Create Inclusive & Equitable Organizations’ if disability is treated as an important component of diversity in the workplace. Their unanimous response: “No”.
When I interviewed Gail Williamson, a talent agent for people with disabilities, one of the things she talked about was how, when we see people on the screen with disabilities, we gain a better understanding of them. She noted:
“[O]ne of the things I feel that we do by putting people [with disabilities] on TV and film is to encourage employers to hire people because they see them employed. And I think that makes a difference. I think the HR person at a company who sees a technician with disability fixing a computer on a TV show, may say, “Well, I’m going to hire an IT Technician who uses a wheelchair.” So I think that’s really important.”
So while Gail is working on getting more people with disabilities featured on TV and film, I also spoke to a New York Times bestselling author who works to feature more disabled characters in books. Marieke Nijkamp is a #1 New York Times bestselling author of books such as This Is Where It Ends, Before I Let Go, Even If We Break and The Oracle Code. They also edited the anthology Unbroken: 13 Stories Starring Disabled Teens. Marieke is neurodiverse and also has a physical disability, and this is part of what motivated them to write books that include characters with disabilities. Marieke told me:
“I think it helps to have inclusion in books and the media to combat the idea that humanity and disability are two different things…. I’m just sort of hoping that seeing disability in all its different shapes and varieties will help people understand that this is who we are…. We need to be able to interact with the world and we need to be able to have the world be made for us too, instead of being created to exclude us.”
I couldn’t agree more with what they said, or with their later statement that, “In most cases, with education, and with good role models, and with fighting for inclusion that a lot of people can learn to do better.”
We have to do better. When I asked Houston, a 23-year-old photographer and actor with Down Syndrome, “What would you tell people about being inclusive of people with disabilities like Down Syndrome?” he responded, “Be nice. Be a good friend at all times.”
And Laura told me:
“Well, my dream is for the world to see not only am I a person, but also, I am someone who you have to treasure, worship, love and treat kindly. I don’t want to be a person who is hurt all the time…. We are treasured by God.”
So true. I feel really lucky for all that I have learned from people with disabilities, including my mom. I think that by providing more education from the perspective of people with disabilities, and by bringing disability into the discussion of diversity, equity and inclusion, our world will be a better place – for those with disabilities and without.