Creating Inclusive Work Environments for People with Disabilities with Lifelong Disability Rights Activist, Judith Heumann

In this episode of On Record PR, Caitlan McCafferty goes on record with lifelong disability rights advocate Judith (Judy) Heumann to discuss how business leaders can best approach creating truly inclusive work environments, including for people with disabilities.

More About Our Guest: Judith E. Heumann

Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people. She contracted polio in 1949 in Brooklyn, New York and began to use a wheelchair for her mobility. She was denied the right to attend school because she was considered a “fire hazard” at the age of five. Her parents played a strong role in fighting for her rights as a child, but Judy soon determined that she, working in collaboration with other disabled people, had to play an advocacy role due to continuous discrimination.

She is now an internationally recognized leader in the disability rights community. Her memoir, authored with Kristen Joiner, of Being Heumann “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” published by Beacon Press and audio recorded by Ali Stroker, who is the first wheelchair actor to perform on Broadway. Judy was featured on the Trevor Noah show.  Judy is featured in Crip Camp: A Disability Revolution is a 2020 American award-winning documentary film, directed by James LeBrecht and Nicole Newnham, produced by the Obama Higher Ground Production and is available on Netflix. She also produces a podcast called The Heumann Perspective, which features a variety of members from the disability community.

She has been featured in numerous documentaries including on the history of the disability rights movement, including Lives Worth Living and the Power of 504 and delivered a TED talk in the fall of 2016, “Our Fight for Disability Rights- and Why We’re Not Done Yet”. Her story was also told on Comedy Central’s Drunk History in early 2018, in which she was portrayed by Ali Stroker,. As Senior Fellow at the Ford Foundation (2017-2019), she wrote “Road Map for Inclusion: Changing the Face of Disability in Media”. She also currently serves on a number of non-profit boards, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, as well as the Human Rights Watch board.

Judy was a founding member of the Berkeley Center for Independent Living which was the first grassroots center in the United States and helped to launch the Independent Living Movement both nationally and globally.

In 1983, Judy co-founded the World Institute on Disability (WID) with Ed Roberts and Joan Leon, as one of the first global disability rights organizations founded and continually led by people with disabilities that works to fully integrate people with disabilities into the communities around them via research, policy, and consulting efforts.

From 1993 to 2001, Judy served in the Clinton Administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education.

Judy then served as the World Bank’s first Adviser on Disability and Development from 2002 to 2006. In this position, she led the World Bank’s disability work to expand its knowledge and capability to work with governments and civil society on including disability in the global conversation.

During his presidency, President Obama appointed Judy as the first Special Advisor for International Disability Rights at the U.S. Department of State, where she served from 2010-2017.  Mayor Fenty of D.C. appointed her as the first Director for the Department on Disability Services, where she was responsible for the Developmental Disability Administration and the Rehabilitation Services Administration.

She has been instrumental in the development and implementation of legislation, such as Section 504, the Individuals with Education Act, the Americans with Disabilities Act, the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities which have been advancing the inclusion of disabled people in the US and around the world and fighting to end discrimination against all those with disabilities.

Judy graduated from Long Island University in Brooklyn, NY in 1969 and received her Master’s in Public Health from the University of California at Berkeley in 1975. She has received numerous awards including being the first recipient of the Henry B. Betts Award in recognition of efforts to significantly improve the quality of life for people with disabilities and the Max Starkloff Lifetime Achievement Award from the National Council on Independent Living. She has been awarded numerous honorary doctorates.

Caitlan McCafferty: All right. Hello and welcome to On Record PR. I’m Caitlan McCafferty, a guest host of the show and the public relations account director at Furia Rubel Communications. As organizations strive to create true diversity through inclusion in the workplace, it is imperative that they provide an environment where people can be their authentic selves. Today we’re going on on record with lifelong disability rights advocates Judy Heumann to discuss how business leaders can best approach creating truly inclusive work environments, including for people with disabilities. Welcome, Judy.

Judy Heumann: Thank you. Nice to be with you.

Caitlan McCafferty: I’ve grown up in a post ADA world, and I know that I’ve taken for granted the ramps and the chair lifts and the way that the world has been accessible since that legislation has passed. And you were such an integral part of that fight.

Can you tell us about your activism, disabled in action, and describe what you still think needs to happen today?

Thank you for the question. Basically, I had polio in 1949 and I use a motorized wheelchair. I don’t walk and I have limited use of my hands and my arms. So much of the work that I’ve been involved with over the course of my life has been the result of me and many other people that I know facing the same forms of barriers and discrimination. And it’s not just the need to make physical changes within the environment, but also to be able to ensure that people who have responsibility for hiring disabled individuals, as an example, understand what their legal obligations are. Trying to prevent discrimination against disabled people in the application process, in the interviewing process, in the onboarding process and in the day-to-day requirements for the job. And when that is working more smoothly, then we see disabled employees being able to bring their whole selves to their work and enable them to contribute in a way that can advance the objectives of the company.

Caitlan McCafferty: I wanted to talk to you a little bit about language too, because often companies like ours, PR agencies, communications agencies are often tasked with writing statements, internal statements.  I was watching another interview with you in prep for this podcast:

You said you prefer the term “non-disabled” to “able bodied.” Can you explain why for our listeners?

I use the term “nondisabled,” I don’t use the term “abled,” because we all have areas that we’re strong in and areas that we’re not. And so using the word abled for disabled people is clearly in my view, negating the term disability, which more and more disabled people are utilizing as a means of creating language. Where as a community, as a culture, we can more readily come together. And I believe using the word able or ability, intentional or not is basically discriminating against disabled people in a very subtle, but clearly ableist way. I use the term nondisabled for myself, I use disabled people, identity first language. People with disabilities and identity first disability language, I think are that forms of language that should be used. Nothing like differently abled, abled, disabled. Cross off dis, capitalize the A. All of that I think is really ableist.

Caitlan McCafferty: I think that’s so important to sort of educate ourselves about and know before we even start the conversation or continue to have the conversation. Thank you so much for that insight.

Judy Heumann: I think another very important issue is, many disabled people have invisible disabilities. And one of the important aspects of the disability movement is really to create communities where disabled people, whether we have a visible or invisible, or both, disability, where we can come forward and speak about it. So, for myself, I had cancer in 2013 and 2017. And honestly, I didn’t really speak at that point too much about it. Because I was afraid of discrimination. And it was a hard discussion to have.

Since then, I’ve talked about it and really encourage people who have learning disabilities, ADD, ADHD, depression, anxiety, diabetes, whatever it may be. To speak about it as a natural part of life. Now, there definitely are legitimate reasons for people to be concerned in some cases to do that. If the HR department has not really trained people appropriately, hiring managers, supervisor managers may well be not looking at the person equally because of their visible or invisible disability. I think we really have to pay attention to what are the people within the company saying about how they feel they’re being included, integrated, into the overall work of the company.

Caitlan McCafferty: Absolutely. And my next question is related to this a little bit. Belonging is often a feeling that gets missed in corporate DEI statements. We’ve spoken to the ACLU-PA Executive Director, and he really stressed this to us, to create a sense of belonging is important for true inclusion.

What advice would you give to organizations who are working to create that environment?

This discussion is coming at a really timely point because I personally am one that believes that all virtual work is not good. I think there needs… You belong to your computer; you want to belong to the goals of an organization and to the people. And certainly, virtual is something that has been beneficial and has been done for a long time, because when you’re doing global work, you’re not going to be together all the time. But I think, we very much need to look at what does the word belonging mean? And I think it is potentially going to be different if we really have the new normal where people aren’t coming together. Because when you think about whether or not you’re together every day, or you come together a couple times a year, the ability to talk with people, learn about them, their family, outside of work. The opportunities to socialize outside of work, all of that is part of belonging.

And if all of that goes off the table, then I think we really need to define what does it mean to be belonging and how do we create that?

I think we’re seeing more, both children and adults who have been doing pretty much virtual, also having increased mental health disabilities. And are we really ready to help people who are having anxiety or depression or other conditions that they may or may not have had previously? So, I think really in order to make the word belonging mean something, we really need to have a definition of what we mean by belonging and what types of environments do we need to be fostering in order to create an atmosphere of belonging. And I’m not saying that it can’t happen virtually, but I think you have to be much more creative. And I don’t really feel like we’re there yet at all. I think we’re cavalierly using words. And I think if we really care about it, we can’t be cavalier.

Listen to Episode 37: Belonging is the Key to DE&I Efforts. An interview with Reggie Shuford, Executive Director of the ACLU-PA

What are your thoughts about what colleagues can do for each other? We’ve discussed leadership and HR, but on a co-worker-to-co-worker level, what do you think is important?

I think honestly, I have different answers depending on where you are. If you’re in the office, it can be anything from if somebody needs help, naturally doing it. Separate from if they need an assistant for more hours. If you’re going out to lunch asking other people, if they want to go, making sure you’re going to a place that’s accessible. If you’re looking at doing other social activities, including inviting people over to people’s homes, you need to really be thoughtful about how you’re selecting the home that somebody’s going to go to. If there’s someone in the group who is deaf and may need an interpreter or has a physical disability of some sort or whatever. I think it’s really looking more in depth identifying what the interests of people are and really creating opportunities for employees, including disabled employees to really have some honest, open discussions.

Obviously, leadership needs to be speaking about the importance of diversity and needs to be clearly seen as a person who feels each community is of equal value. And needs to take time to be speaking with people, and sometimes speaking to people in an open environment is not necessarily going to get you the real answer. I mean, if one is afraid of speaking up about something, you’re not necessarily going to do it in a group of 10.

I think it’s really digging down deep and looking at what the intent of the leadership of the organization is. What is their ideal of what a work environment should be looking like? How to engage, how to be authentic and honest. And then when commitments are made for change, that people can see that there is a real honesty in wanting to move things forward and being able to celebrate things that are happening correctly.

Caitlan McCafferty: I’m going to zoom out for a moment. Your podcast, The Heumann Perspective, talks about the fight for social justice, for all people.

Why is it important for the social justice movement to be intersectional?

Because our goal is to be able to live equally in our communities. And if we’re not valuing… I mean, there’s two issues. Disabled people come from every other group. So, if we’re not supporting all the other groups, then there is yet another reason for them not to be looking at issues of disability. So ultimately, I think the disability community is one of the unique communities because we do come from every other community. And I think over time we can be seeing that collaboration will benefit not just one group, but will benefit multiple groups.

And since I believe that we all have biases. And one of the ways that we not only identify our biases, but really work on resolving those, is to be meeting with and being a part of diverse communities. That’s one of the ways that I think we learn. So, I think all of that’s very important.

What resources do you recommend for our listeners to learn more about how to support equity, and accessibility for people with disabilities and for all people?

I think there are many different ways. But organizations like Disability:IN allows people to have a lot of materials that can be looking at. Engaging with the disability community in the location or locations that your offices are and learning from them about what they feel needs to be happening. If you’re creating products and making sure the products that are being created are accessible.

I really think it depends. But at the end of the day in however, you’re advancing the face of a company, that company should be able to look inwardly and be working towards creating a work environment where the diversity within the company is recognized and that the people from those communities also feel that they are playing a role in helping to advance the purposes of the organization. And additionally, I think being ready to have the outside world look in at what is happening and be able to talk about how problems have been identified. Work that’s being done to advance progress. So that it’s a learning experience all the time, internally and externally.

Caitlan McCafferty: Judy, thank you so much for joining me today. I’ve really enjoyed our conversation.

Where can our listeners learn more about you and get in touch?

They can listen to our podcast, The Heumann Perspective. They can read my book, Being Heumann. Or if you have grandchildren or kids 10 to 14, we have a book out now called Rolling Warrior. You can read other books on disability. You can come to our website: www.judithheumann.com

Most importantly, you can really be looking at books that are coming out written and developed by disabled people. Look at media and representation of disabled people in media and where you believe it’s being done right. Write a letter to whomever. Where you believe it’s not being done right, write a letter to whomever. Work with other people in the community because I think media representation is so very critical and representation of disabled people is still so very absent or not appropriately represented.

I think we need to be involved with our local television stations, radio stations, and social media. Putting our voices forward and really recognizing that we say there’s 60 million disabled people in the US, according to the Centers for Disease Control. So that’s one in four people. Look around you, look at yourself, do you have a disability that you weren’t sure whether it was a disability? Or you felt that my disability isn’t as bad as your disability? And recognize that it’s a normal part of our lives.

And it’s not always easy, but being able to work more collaboratively together really enables us to be creating a world where we have greatest successes for everyone. I mean, I think Black Lives Matter and other movements have been really important over the last number of years. And for me in the 1950s and 60s, with the civil rights movement, the anti-war movement, the women’s movement. For me in many of my friends, it was the first time that we really looked at the fact that people were not just complaining. They were not just discussing problems. They were coming forward with very critical changes and solutions.

And as difficult as it has been to get them, and we’re still not there. The ability to speak up and out is very important. And I think that’s one of the real issues we’re talking about today. It’s being able to get people to feel that they can and are willing to be honest.

Caitlan McCafferty: Absolutely. Well, Judy, I feel like I could talk to you all day about these things. I just have so many more questions from that last answer even, but I will let you go. Thank you so much for your time today. Thank you to our listeners as well.

Learn More & Connect

Judith E. Heumann

Website: https://judithheumann.com/

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (Book): https://tinyurl.com/phf7swb3

The Heumann Perspective (Podcast): https://judithheumann.com/heumann-perspective/

YouTube: https://www.youtube.com/channel/UCB7pemkbDQYezB6PeDFXTvg

Caitlan McCafferty

Learn more about Caitlan McCafferty

LinkedIn: https://www.linkedin.com/in/caitlan-mccafferty-32925658/

Twitter: @CaitlanMcCaff

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