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Image description: A headshot of Judy Heumann, a cis-gender white woman who is a wheelchair user with short brown hair. She is wearing red glasses, a maroon and black buttoned-up embroidered sweater, and a matching maroon shirt underneath. She is smiling kindly. Image credit: Juy Heumann

Juniper Talks: An interview with Judy Heumann

Disability rights activist Judy Heumann discusses the 31st anniversary of the ADA.

by E Jamar and Hebatullah Issa

On the heels of gracing the red carpet at the Academy Awards for the nomination of Crip Camp for Best Documentary Feature and on the 31st anniversary of the passing of the Americans with Disabilities Act, Maura Horton, MagnaReady founder, Care Coach, and Chief Community Officer at Juniper Unlimited brings us an interview with world renowned disability rights activist Judith “Judy” Heumann.

Since the 1970s, Heumann has notably contributed to and developed human rights policies and legislation bettering the disabled community. Not only did she lead the mainstreaming of disability rights into international development, but she served in the Clinton and Obama administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education and the first Special Advisor for International Disability Rights at the U.S. Department of State, respectively. Her work, efforts, and dedication to disability rights played a key role in the implementation and development of legislation like the ADA, as well as other major legislation such as Section 504 and the Individuals with Disabilities Education Act.

It is a great honor and privilege to invite Heumann for an in-depth discussion on the past and future of the ADA, fashion, disability rights, and much more. In this interview, we’ll get to pick Heumann’s thoughts on the global disability rights movement, as well as her insights into the apparel industry, disabled people in the workforce, and what the industry and individuals can do moving forward to be more inclusive.

Maura Horton: When reflecting over the last 30 years of the ADA, what do you project the next 30 years to look like? If 30 years is too far out, perhaps 5 or 10 years?

Judy Heumann: I can't speak about what's going to happen in 30 years. I can talk about what I've seen over the past 30 years, where I think we are, and where I hope we may be moving. First, we have to look back farther than 30 years to look at what enabled us to get the Americans with Disabilities Act passed. The disability rights movement in the United States and around the world is still in its infancy. It’s like we’re standing now. But, when you compare our movement to other rights-based movements, we're towards the end of the group, and that's not a criticism. It’s a reality of the breadth of who we are as a disability community and the shifts that have gone on over the last 50, 60 years, 70 years. 

We've slowly moved away from looking at disability as a tragedy and seeing disability as a normal part of life and needing to look at the absence of rights and laws and the empowerment of disabled people. 

For me, one of the positive things that have been occurring both in the United States and around the world is that disabled people have been coming together internationally. We see this through things like the Convention on the Rights of Persons with Disabilities, which is modeled in many ways off the ADA. And, when we look at the ADA and the CRPD side by side, two very important similarities are the emergence of disability rights movements around the world, which transcend particular labels of disabilities.

I had polio, but it was important when fighting for our rights that it wasn't just people with polio that were working on advancing the rights of disabled people, but that we were working with people who had all forms of disabilities. We were able to come together and look at what were some of the common issues. Common issues were and still are discrimination.

The common issues also have been the fact that many people have not believed that disabled people can participate equally within society. When we move away from the view that disabled people are hopeless, helpless cripples, and looking only at the medical model of disability, we’re able to look at the human rights model. I think that’s changing. 

Another important aspect of what's happened since 1990 is the emergence of what the younger generation is calling the “ADA generation”, where disabled people who were born around the time of the ADA and after the ADA are recognizing that the ADA is a very important document, but that it needs to be effectively implemented, and it needs to be moving in the direction of the changing times. So, some of the important issues we're dealing with now are enforcement of the ADA and enforcement of other laws.

In the end, what do I hope to be seeing? I hope to be seeing an ever-strengthening and diversification of the disability rights movement, which is essential because our movement has to be reflective of everyone in it. Over the next couple of years, I want to see a truly racially diverse disability community that also represents underrepresented groups, like people with mental health disabilities and people with intellectual and developmental disabilities. 

Image description: A black and white photo of Judy Heumann at the 504 protests in the 70s. Judy, a cis-gender white woman who is a wheelchair user with short brown hair. She is wearing glasses and a jacket with a 504 pin that says “Sign 504 Now.” She is passionately speaking at a microphone. Image credit: Judy Heumann

Horton: The whole movement is so important, but sometimes change comes down to individual industries. If you had to choose one industry that needs focus immediately, where would you shift focus and take action first?

Heumann: There are approaches that all industries need to be taking. I believe there needs to be a model that industries can use and bring within their organizations to apply as appropriate.

National organizations on disability, as well as state and local groups that are working with businesses, are important because they're conveners of businesses and know the essentials such as how products are being designed. As a company, you need to ask: who are you working with when you're looking at the development of your products? Are disabled individuals a part of your product design, both as customers and as employees? 

Horton: Could you speak to how you think companies, now that they must release numbers about their disability and inclusion hiring practices, are still missing a level of where people sit at the table?

Heumann: I agree with what you're saying, clearly disabled people appear not to be at the tables where decisions are being made. There are several issues here. First, it’s true, companies have not been hiring as we would like to see them hiring.

Some companies are doing a better job than others, but also because so many people have invisible disabilities that there may well be people at the table who have a disability who are not acknowledging their disability. I think it's more than just having a body with a disability. And as we know, because of the stigma around disability, and I think sometimes people don't even realize that they are covered by various laws in the US because they have a disability, we need to be developing all of that.

Horton: In your opinion, what can one person on a human level do immediately, daily, to start implementing change within the room?

Heumann: What I say to people is, do you have a disability? Do you know people who have disabilities? Do you understand the issues that people are facing? What are you doing as you're learning about barriers that people are facing? What are you doing in your own life, in your family, in your business, and in clubs that you belong to?

Horton: If you're passing a torch to new people, are there certain people that you're passing this to, that you should point us in the direction of watching these people or making sure we're listening to these people? 

Heumann: I don't feel like it's my place to pass a baton. I like to keep expanding the network of people that I'm learning from and know. And I like to be introducing people that I know to other people, like you. 

Horton: What changes in the apparel industry would you make if you had a magic wand? I know you’ve talked about shoes before.

Heumann: I think the industry itself should spend more time talking to those of us who have disabilities: children, young adults, adults, seniors—in the design realm. When I saw what you were doing with the magnetic buttons I thought that was great because magnetic buttons are not just helpful for me, or the person helping me, but they're also helpful for anybody. If you don't have to worry about lining it up evenly, because that could be a real problem, and if they can easily be utilized, it's great for so many people. Also, jewelry.

Horton: Jewelry, that's a big thing. Some jewelry lines have magnetic closures, but they are few and far between. I ask because if I look at the scope of everything, we're one small industry, and even with all of the changes we’re making, there’s so much more to be done.

Heumann: I spoke with a class of architectural students yesterday and the teacher was very much concerned about the fact that the course that he's teaching on accessibility and disability is separate. While that’s fine, disability is our accessibility and design, universality, and design is not a part that's integrated into a lot of other curricula in the era of architecture. And I think in many cases, that's because the professors don't understand it themselves.

Horton: How many hours do you work in a week?

Heumann: Me? About 80.

Horton: Do you have anything else you'd want to add?

Heumann: It's important that we're also reaching out to people when they are acquiring their disabilities. We have emphasis on children, though we need to be doing more work that’s not just facilitating the learning for disabled children, but also enabling kids with disabilities, visible and invisible, from different backgrounds, racial backgrounds, religious backgrounds, sexual orientations.

But, we also need to recognize that a substantial number of people acquire their disabilities as they're getting older. I strongly believe that we need to be looking at people when they don't have their disabilities because even if they don't have a disability, they have family members who do or parents who are becoming older and maybe acquiring disabilities and such.

I think we need to recognize that we need to be facilitating people, making these transitions, and clothing is a very important aspect of many people's lives.

How to help people see that while their life may be changing, that it still can be valuable.

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