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VOICEOVER: The following program is presented as part of Move To Include, a public media initiative made possible with support from the Corporation for Public Broadcasting, a private corporation funded by the American people.

EMMANUEL SMITH: For me, every area of my life and without the protections and the rights afforded to me as a person with a disability, my life would look very, very different.

I likely wouldn't have a college education, I likely wouldn't have a job. And I also wouldn't be protected from institutionalization later in life, which is a threat to a lot of people with significant disabilities have to live with and fortunately have, through the ADA, an avenue to protect their right to live and work in the community.

[Text on screen with a photo of President Bush and Tom Harkin]

"The Americans with Disabilities Act, or ADA, was signed into law on July 26, 1990, by President George H. W. Bush.

Senator Tom Harkin helped craft this landmark legislation. He knew firsthand of the challenges faced by people with disabilities from his brother, Frank, who was deaf."

TOM HARKIN (former U.S. Senator, Democrat-Iowa, 1985-2015): Let me paint a picture for you. I'm often asked what life was like before ADA for a person with a disability. Think about it this way, life was one of segregation, separation from your family, like my brother, from your friends, from your community.

It was a life of severe limitations of where you could go, what you could do, what you could be.

It was a life of hurtful language. Think about the language that was used. It was also a life where the most well-meaning people treated you with pity and patronizing attitudes.

[Kensie Channon and a friend communicate using sign language during a video chat.]

KENSIE CHANNON (Deaf Rehabilitation Counselor, Iowa Vocational Rehabilitation Services): My name is Kensie Channon.

I am from Des Moines. My entire family has pretty much been raised on the east side of Des Moines. So pretty much my whole family is a native Iowan. We're very integrated into the community.

And as I was raised here we realized that I also actually ended up having a deaf brother so that I wasn't the only deaf person in my family.

Kensie: And so I was able to have somebody I was living with who was deaf as well.

And so as I went through my school system and grew up and eventually went to college and built relationships with more deaf people and knowing the hearing world and my background coming from that but also having a deaf brother and then transitioning out into the deaf world and within that education system really expanded my identity and that is how I kind of grew up.

And so we have the two Channons in the family who identify as deaf.

EMMANUEL SMITH (PABSS Advocate, Disability Rights of Iowa): It's called Osteogenesis Imperfecta, more commonly known as brittle bone disease.

So I've broken maybe 50 odd bones in my life and have a lot of different ongoing issues related to that.

So I grew up with significant disability and I've benefited tremendously from a lot of really important legal protections that have made my life possible.

LAURIE McBRIDE (Iowa Deaf-Blind Specialist, Helen Keller National Center): My hearing loss is the Usher Syndrome Type II, which typically born with a hearing loss and vision loss later in life, usually teenagers.

Mine wasn't discovered until 2012 for the vision loss.

There is a spectrum of deaf blindness because I fall into that spectrum of having low vision and hearing loss, enough to where I have to wear hearing aids to hear and understand a normal conversation.

And then you can go to the other end of the spectrum of just like Helen Keller herself who is completely blind and completely deaf.

You can have any combination in between to where you have somebody who is deaf, completely deaf, but has low vision like myself, so their primary language would be American Sign Language.

But then you can have somebody who is completely blind and hard of hearing and they voice.

And you can have somebody that is in between where they're hard of hearing where you have to talk really loud and they have just very little vision left.

So they need a lot of assistance with mobility, either using a cane or a guide dog.

[Text on Screen]

"The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, and transportation."

EMMANUEL: The Americans with Disabilities Act, it's important to understand, is one of the most comprehensive pieces of civil rights legislation ever written and it really aimed to open up areas of American life people with disabilities hadn't been able to really interact with at all.

We had been very marginalized to the periphery of American life. And the entire aim of the ADA was to open that up. An entire generation of people with disabilities have finally now been able to grow up with those protections in place.

And the ADA generation is about growing up with the understanding that you're going to have the legal right to receive government services in an accessible way, you're going to have the legal right to succeed or fail in your job by your own merits and not by a whole bunch of preconceived notions of disability.

And so it's an incredible privilege to grow up with those protections, knowing that so many people fought so long and hard for those things to be put into place.

But it's also a stewardship, it's a responsibility. I think people think of laws as if they're passed, we put them in a dust bin somewhere and we pull them out if we need them. But laws are very much living things, they change, they grow, the expanse of what is an ADA issue and what isn't has changed over time. Courts and legal minds have had to kind of fight and struggle and talk and understand what does the ADA mean in the 21st century.

VOICE OF IOWA PBS PRODUCER [American Sign Language interpreter signs]: So we're coming up on the 30th anniversary of the passage of the Americans with Disabilities Act. How has it impacted your life?

KENSIE: So, the Americans with Disabilities Act, I remember my family talking to me and saying, these are the things you have to be aware of.

And I remember thinking, I'm going to have to work so hard, but then being so thankful for a law that people have to follow to provide services. And it was my privilege to go through the education system with interpreters, because I was mainstreamed, and so I was the only person in that deaf school, so it was nice to have that access.

And then I went to college and I was mainstreamed with deaf and hard of hearing people and I remember having one deaf teacher who I could actually directly communicate with and it was so great to have that.

And so when I continued on that path and had some hearing teachers with interpreters, also with note-takers, with other students there within that hearing classroom, within these advanced college classes with these deep discussions and I'm trying to keep track of hearing students making comments, also through the interpreter, also with a hearing teacher, I ended up being able to go to the disabilities office and having contact with them so they could make sure that my accommodations were being met.

And so I did that, I followed up with the disabilities office and I just let them know these are the rules that are supposed to be set up and they followed that and were able to provide accommodations.

LAURIE: For me that's where it started. My hearing loss wasn't discovered until I was 5 years old and I had started school. And it was a teacher that said, there's something wrong here. That I'm either not listening or I'm not hearing.

So she went to the principal of the school and then they brought in my parents and then they had a meeting and they decided what the next step was to do and that is how they discovered my hearing loss.

So from that point on the educational system made sure that I had whatever accommodations I needed to be mainstreamed. And so I was raised in a hearing world, but I had accommodations along the way for my hearing loss and even through college.

When I moved here to the States, still with the ADA laws, it's very important because it's still important with the education. I went back to school here and I felt like I was still in Canada in a sense that they have a disability advisor at the colleges and universities.

So we do have those accommodations to study and to learn so that we can, in the end, find a job.

So that's where the ADA is important because if it wasn't for that I wouldn't have had an education at all.

[Words appear on screen]

“One in ten working-age persons has a disability. That’s 18.3 million people.”

TOM HARKIN: Still today people have patronizing attitudes. “I know what's best for you.” Which of course started the national cry of the disabled community, nothing about us without us.

Don't tell us what we need and what we should do, ask us, we'll tell you.

EMMANUEL: It would be easier probably to tell you ways it hasn't impacted my life.

My ability to get on a bus and go down to the mall to have an evening with my friends or my ability to go to Drake University as a student, to live and operate independently.

My first job I had to talk about accommodations and how I could maybe move a ticket-taking tub from way up high to down low so I could work at the movie theater and rip tickets.

And I think a lot of times people with disabilities, the idea that we live and work independently, with help, with supports, but still a life of our own making, and that is what the ADA has allowed me to do. And it's important to remember that the ADA is only as strong as the people willing to enforce it.

And I don't take those protections for granted, because without all of us pushing together to reaffirm these rights, they're not going to get used and they're not going to get used to pressure and to pull us along into adopting a more equitable treatment of marginalized people.

KENSIE: So for myself as a deaf individual, the ADA obviously applies to my life, but I would want to make sure that people know their rights and that they know the law and that they know that it applies to them. Thinking they're supposed to receive these accommodations the same as a hearing person whether I'm disabled or not, but if you're disabled you are able to have those accommodations.

And the purpose for the ADA is, or I think the way it can be improved for the ADA as a law is to be able to ask the person who is disabled, what do you need, rather than following maybe somebody else's accommodations or these are the standards that have been set up or this is just a process that has been grandfathered in or this is our philosophy.

Instead we should be focusing on the people, focusing on the law, and what they need and developing maybe more with disabilities because I think there's a lot of invisible disabilities that can come into play as well.

And so people need to also be able to advocate for themselves but recognize that there are disabilities, and I think people with disabilities might struggle with being to advocate for that, so being able to talk about their rights or going to disabilities offices or getting civil lawyers involved if needed when they're having those frustrations.

LAURIE: Sometimes the general public is like, well you don't look blind. I think that's a common thing, you don't look deaf-blind.

I have run into many people not realizing that I have hearing aids and I have to attribute that to my speech therapist. I had a very good one and I had him from grade 4 to grade 12. And even in a general conversation with him he would correct me. And I would argue with him as any teen would. “Well, nobody else says it that way, you just don't hear it.” So he wouldn't allow any excuses. So that misconception that I do wear two hearing aids, you can't always see them.

EMMANUEL: It's reaffirming that I as an American citizen and I as a person have value and that because people with disabilities are valuable, because we have something to offer, our society loses something when it forces us to the back of the line or it forces us into the corners of our own society.

We are all made better by diversity and inclusion and that not only are we going to make this big value statement, we're actually going to provide the legal protections and the means of which to make it a reality.

And that is what the ADA is, it's a tool to use to help break down those barriers, many of which have existed for generations after generations.

[Words appear on screen.]

“Only a third of working-age people with disabilities are employed compared to the three quarters of people without disabilities.”

Emmanuel: I work at Disability Rights Iowa, which is a law firm for people with disabilities providing legal and advocacy services for people.

I'm not an attorney but I'm an advocate who kind of helps people navigate different accessibility barriers or things that might be preventing them from being able to go to work.

LAURIE: I currently work with Helen Keller National Center for the Deaf-Blind.

This job that I do is, the position is titled Deaf-Blind Specialist and its main focus and goal is employment for our deaf-blind consumers.

[Laurie checks her email and joins a virtual meeting on her computer.]

Being able to show them that yes we can do what we want to do the same as anybody else, but I also learn from them and that is what makes it good for me is I can learn from them, from their experiences, because some of them are older than me and they know more.

They've had it rougher than me, they didn't have all the accommodations.

So that relationship is important to me.

And I can remember in 6th grade learning about Helen Keller herself, her story, and then I always wanted to do something like what she did.

KENSIE: Communication, just making sure that people have a relay number, meaning that they are using a video phone or other on their phone because they want to go out and do something.

How are they able to call another person or call for help if they're stuck somewhere? What do they do?

I make sure that people have a video phone app, maybe they're using Sorenson, Convo, ZVRS, those companies provide free relay services for deaf and hard of hearing people to have, to download on their phone.

They can also have it at home as well, which is what I use for my work environment.

And so I really try and encourage people to have those, to be able to use them to connect, so I provide those supports.

Or if they need to make a doctor's appointment I make sure they're able to make those phone calls.

And also for people to know that they have a right for their employer to meet their needs, to meet their communication needs, to make sure that their general rights just as a human being with the ADA law, with the disability services advocate is there for them.

[Words appear on screen.]

“Since the passage of the ADA not much has changed by way of employment of people with disabilities.”

TOM HARKIN: The unemployment rate for adults with disabilities today is the same as it was 30 years ago.

That is a blot on our national character. When we have shown we know, not only we, the business community, people know when they hire a person with a disability they'll get the best worker they've ever had, someone who is loyal, someone who works hard, someone who always shows up to work on time, makes fewer mistakes.

Believe me, we have so many studies of this. That's the one thing, since my retirement from the Senate, the one thing I'm focused on is employment of persons with disabilities and what we call competitive integrated employment.

That means not some job set aside for a person with a disability, that means hiring a person with a disability for a job for which that person is qualified working alongside everybody else, same pay, same benefits, everything.

[Words appear on screen.]

“For thirty years, the regulations of the ADA have helped protect the rights of people living with disabilities. But, there is work to be done to ensure that challenges are being met.”

LAURIE: I think overall for ADA, you've got to keep moving it forward and adding to the ADA laws of accommodations, different accommodations as technology changes.

Technology is always changing and always adding an extra avenue for independence for individuals whether we're deaf-blind or whether there's mobility issues, physical, mental, the list goes on and on.

As far as what technology can do nowadays compared to even 20 years ago, the technology, I've watched it grow in the last 20 years. There's always new apps, there's always new programs coming out. So the ADA law needs to continue moving forward and adding whatever accommodations are needed.

And if something new comes up from an individual saying, “hey I can do that,” but they're not allowing me, they need to speak up and say, I can do it.

KENSIE: Well, the ADA law I feel like has been set up, I think we really want to continue to update that and with social media being on top of that and TV and closed captions, all these things being added. Are these things covered? Are interpreters always covered?

With COVID-19 that happened, it's a nationwide pandemic, we saw a lot of interpreters on TV but were they always there? Or did they have captions? It really varied, sometimes there were none. And so the access provided by the ADA is most important and we really need to be following that.

So in the future I'd like the ADA to make sure that people are aware that they can get their communication needs met and making sure they are reasonable accommodations that are met because I don't want people to face these frustrations with their disability.

So we have that law so that they can advocate for themselves.

And the ADA also needs to advocate for people and make sure that the people who have been passing the law continue to enforce that law.

EMMANUEL: We need to fulfill the promise of the ADA, which was the idea that we are not going to take a natural expression of the human experience and take disabled people and segregate them off into the periphery of American life, that that is not acceptable.

George H.W. Bush was very clear the entire aim of the ADA was to take down those barriers, those shameful walls of exclusion I believe is what he called it.

And that promise is not being fulfilled when we are forcing people with disabilities into a situation where they have to either live in a facility to receive even the basic elements of care.

To live kind of with that sword of Damocles over our head, that real risk of institutionalization, it's not a good way to live your life.

So the ADA now, by being interpreted by the courts, is a means to protect people from institutionalization and that process and kind of that whole transformation out of that decision is ongoing.

And unfortunately we're living in a situation now, where institutionalizations have become incredibly dangerous for people with disabilities and I really worry of all of the thousands upon thousands of people with disabilities who are living in institutions, not because that's how they want to arrange their life, but for lack of fulfilling the promises of the Americans with Disabilities Act.

So I'm trying to remain thankful for all that I've lived, all of these protections that I enjoy and have helped shape my life, while also cognoscente of the fact that our failure to fully live up to the ADA has left a lot of people behind and not everybody is going to be here by the time we get to where we want the ADA to be.

LAURIE: I grew up always learning you can do what everybody else does. There's nothing to stop me. There's nothing really to stop us from doing what we want to do and the same as everyone else.

[Credits]

Producer: Laurel Bower

Editor: Julie Knutson

Videographer: Rick Fuller

Audio Mix: Chad Aubrey

Graphics Animation: Brent Willett

Graphic Designer: Phong Duong

Closed Captioning: Tiffany Hill

Archival Photographs: Drake University Archives and Special Collections, Getty Images

Director of Programming & Production: Justin Beaupre

Executive Producer: Deb Herbold

Copyright 2020 Iowa PBS

VOICEOVER: The program you just watched was, presented as part of Move To Include, a public media initiative made possible with support from the Corporation for Public Broadcasting, a private corporation funded by the American people.