Judy Mark has a 23-year old son with autism, which led her to become co-founder and President of Disability Voices United. Judy leads DVU’s advocacy and programmatic efforts. Judy was instrumental in the passage of the Self-Determination Law and has been active in the implementation as a member of the DDS workgroup, Chair of Westside Regional Center’s local advisory committee, and a member of the Statewide Advisory Committee. Judy has written and edited two books on the Self-Determination Program and has spoken extensively throughout California and trained thousands of individuals and families.
Also a faculty member at UCLA, Judy teaches undergraduate courses in the Disability Studies Program. She recently led the Autism Media Lab which produced seven short documentaries on the inclusion of people with non-speaking autism. Her past professional experience includes over 30 years with national policy organizations, most extensively focusing on immigrant and refugee rights.
Judy has a BA from UCLA in Communications Studies and a Masters in Politics and Public Policy from the Eagleton Institute of Politics at Rutgers University with coursework at the Woodrow Wilson School at Princeton University. Judy lives in L.A. with her husband, attorney Allen Erenbaum, and son, Joshua, and she visits her daughter, Emma, often at Barnard College at Columbia University in New York.
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Hi, my name is Judy Mark, and first and foremost, I’m the parent of a 23 year old son with autism who has inspired me to do the work that I do. I am the founder and president of an organization called Disability Voices United, which is an organization directed by and for people with disabilities and their family members. And we advocate for choice and control of our lives, meaningful outcomes that matter to us, and equity and accountability in the systems that support us. I also am a professor of Disability Studies at the University of California, Los Angeles or UCLA, where I teach two different courses. One is called the Autism Media Lab, which makes films cooperatively with people with non-speaking autism and undergraduate students at UCLA about the inclusion of people with autism in the community. And I also teach a class called Autism and Neurodiversity, which is kind of the most recent issues around autism and neurodiversity, and ensuring that the undergraduate students really understand what it means to fully accept people with autism and not try to fix them.
In my work that I do, with both Disability Voices United, with the UCLA Disability Studies Department, as well as, as a mom, the Americans with Disabilities Act has had a profound impact on our lives, for my son, being able to know that as an adult, he’s fully included in the community that, he’s not institutionalized is very critical. He’s only 23 right now, but had he been born when the ADA was first passed, it’s very likely that instead of getting the services that he needed in school or getting the services he needed in the community, he would have been institutionalized at that point. Certainly back in the sixties, if you were a parent who had a child who was diagnosed with a significant, significantly impacted by autism, many people were just institutionalized. Parents were told, you know, you’re just better off putting them in an institution and visiting him once a month.
That didn’t even come up when my son was born in 1997 because already we had the full weight of the ADA behind us. We had the full weight of the IDEA, the Individual with Disabilities Education Act, behind us. And we knew that we could show up when my son was three years old on the doorstep of his local public school and they had to take him. They couldn’t send him away. And so it, it had a profound impact on his life as he grew up. And now that he’s an adult and out of school, he has access to community based services paid for by the state and federal governments, called home and community based services where he now has an aide that goes with him into the community safely every day, and that he is able to meet his hopes and dreams.
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In addition, one of the great things that, um, we care about here in California and in other states as well, is a concept called self-determination, which I believe drew directly out of the ADA because the that issue is that people really want to have choice and control over their lives. In so many cases, certainly in California, you receive services through something called, funded through something called regional centers and regional centers basically give you a couple of choices. They say, you know, you can be in this group day program during the day. And here are a couple of day programs for you to choose from. It’s very segregated. It’s not, there’s no individual choice. Maybe you come in and you have a choice of, you know, singing songs in one corner and doing arts and crafts project in another corner, or maybe going to the park,
none of which my son enjoys. And so for him going to a, sort of a segregated program was really problematic. And we’ve been able to take advantage of a program here in California called self-determination, which exists in a whole bunch of states. And what that does is it gives him a set budget, allows him to have the authority and the responsibility to spend those funds in ways that help him achieve his goals. And it’s not really, what’s about available in his particular community. It’s about what’s possible. And so if it’s not the, in the, the specific this vendor program or that vendor program, but it’s about where we want to go with our lives. My son loves to drive around. He doesn’t drive himself, but he loves to drive around with his aide around the community.
And so we’ve come up with an idea to start a small business for, with him, where he delivers things. He delivers, if somebody has a package that needs to be picked up, or somebody wants to have their dry cleaning picked up he’ll he can do that and make some money off of it. So, you know, because we have self-determination and can control a budget, we can hire a business manager, we can create a website and all of these things are done so that my son can actually have a job, a nontraditional job, but it is still a job that he can have in the community. So, you know, that the concept of self determination clearly is drawn directly from the Americans with Disabilities Act, while maybe they didn’t use that terminology or think about it in exactly that way in the 1990s, it is, it is clearly how it has, it has risen up over the years.
And, you know, we’re really hoping that things can go a lot further. Where we can go from here, things are not, things are not perfect. There is still a lot of issues where the ADA is not implemented as intended in many communities, in many states, there’s still long waiting lists in some states, for people to be able to get access to community services. You still have some adults sitting at home all day long, doing nothing, never being in the community, not having support staff. You have children still very segregated in their schools, and they are not provided appropriate education. We still have a lot of ableism in this world where people are still discriminated against. You know, I call disability rights the last civil rights community. We often see too much where, when people talk about equity and inclusion, they’re talking about race and ethnicity and gender and even LGBTQ communities, but they, when they think about disability, it’s often an afterthought.
And it’s starting to change. A lot of the powers that be are understanding that, that our community is, is critically important as well, and that you’re not truly an inclusive, community organization foundation, university, if you’re not including people with disabilities in a really meaningful way. I mean, even the university where I teach UCLA, has a lot of problems with inclusion. They don’t really understand what it means to include people who are non-speaking. They don’t provide one-to-one aides for people who need them, you’re required to pay for all of that. Let’s say you’re a person with a physical disability, and can’t take notes yourself, physically take notes yourself, you have to pay out of pocket or get another sort of service to be able to have someone do your note taking for you.
The only kind of accommodations that that UCLA provides is, you know, you get longer to take a test and, you know, you maybe get to sit upfront in, in the front of the class. I mean, those are important accommodations, but those are not enough, and I think that, that we have a long way to go at, from, from K through 12, in universities, we have employers who think of hiring people with disabilities as a community service project, as opposed to actually people with disabilities bringing value to their companies. So, you know, I think we have a long way to go, but, you know, 30 years is still kind of a baby of this law and, we need to continue to enforce it. We need to have an administration that will enforce it federally, and we need to have states that enforce it locally as well. And so you know, I think we have a long way to go, but I’m really encouraged from what I’m seeing, you know, around me, that disability is being talked about in a way that I’ve not seen it before.
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In partnership with Diana Pastora Carson, M.Ed.
Author: Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools & Communities, and children’s book Ed Roberts: Champion of Disability Rights, ADA 30th Anniversary Edition https://www.dianapastoracarson.com/store
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