Perkins Talks Progress—And What Lies Ahead —With Two Long-time Disability Advocates

A new wave of disability awareness and advocacy work is looming. Perkins sat down with two nationally recognized disability advocates for a thought-provoking conversation about the Americans with Disabilities Act on its 30th anniversary.

Senator Tom Harkin and Perkins Ambassador Kim Charlson pose together.

Senator Tom Harkin and Perkins Ambassador Kim Charlson pose together. Taken September 2019 at the National Press Club, Washington DC.

July 27, 2020

Because Perkins is committed to preparing students for the world, and the world for our students, we are excited to have had the opportunity to organize a conversation between retired U.S. Senator Tom Harkin of Iowa, who introduced the Americans with Disabilities Act (ADA) in the Senate in 1988, and Perkins Ambassador Kim Charlson who oversees the Perkins Braille & Talking Book Library and its mission of providing accessible reading materials. She was also the first female President of the American Council of the Blind.

Their hour-long conversation took place via Zoom, as most things do these days, covering healthcare, community, education, job training, employment and accessibility.

As for what advances may be on the horizon, beyond driverless cars, there’s no neat answer. We are living in messy times. Americans’ focus should be on the long game, the two experts agreed. A new wave of disability awareness and advocacy work is looming. As it has since 1829, Perkins will be at the forefront of many of those changes.

Every pillar of the ADA, from full participation to self-sufficiency, was part of the discussion. But the prevailing theme after three decades of this law seemed to be that people with disabilities are more independent, but less satisfied... because there is still more work to be done.  
 
The Move Away from a ‘Dependent’ Mindset

Senator Harkin: From time immemorial, we talked about people with disabilities as having something wrong with them. But what was wrong was how we as society treated them.
When you dismantle this type of discrimination, it helps everyone. Over the last 30 years, that has happened. There has been a real change in attitudes. More and more people understand not to define someone by their disability, but by their whole person. We are now talking about people’s abilities, their hopes and dreams. We are changing the patronizing attitude of the past—that idea that people with disabilities need to be taken care of and that they ‘don’t know enough’ to make decisions for themselves.

"From time immemorial, we talked about people with disabilities as having something wrong with them. But what was wrong was how we as society treated them." - Senator Tom Harkin

Kim Charlson: This rings incredibly true for me, too. A mantra for me as an advocate has been that we need a seat at the table and to be a part of the decision-making process. I know that if the ADA had not gone into effect, my career would have been very different. People would probably not have been open to a blind person as a librarian. But with the ADA it was now possible, and people had the vision for what could be, and the perception and belief to allow it to happen. I saw that openness in many places. There has been so much change—in particular, the high level of expectations that people with disabilities have for themselves. In the 1990s, many people with disabilities still had low expectations because society had low expectations of their abilities. Today, people expect to have people working with them, because they experienced it early in their lives. This culture shift was slow at first, but the cumulative effect of the ADA over the years has heightened awareness.

"A mantra for me as an advocate has been that we need a seat at the table and to be a part of the decision-making process." - Kim Charlson, Executive Director of Perkins Braille & Talking Book Library

Technology as an Opportunity and Danger

Senator Harkin: The changes in technology have done a great deal to open things up. If more and more work is being done online and from home, we want people with disabilities at the heart of that, we want both hardware and software to be accessible. The tech is getting remarkably good for text to speech software. Tech has opened up opportunities for rural residents to work remotely where they choose to live rather than being compelled to move to the cities. The fear I have, the danger, is that this will be a new isolation for people with disabilities as they won’t be integrated into the community or have competitive, integrated employment. Technology offers both a danger and an opportunity. 

Kim Charlson: It’s a two-edged sword. Tech has opened up opportunities for rural residents to get jobs in cities. But there is also that element of isolation. It puts extra responsibility on the individual to go out and make sure they are a part of society. This is difficult especially now in the pandemic.

The Power of Early Education and Role Modeling

Senator Harkin: We need integration at the earliest possible age. That is what breaks down the barriers. When you grow up with people that are different from you, it makes them seem part of the norm. We must continue to press for integration. That is the key to getting over prejudice and bigotry.

Kim Charlson: When students tour the campus and we teach them about assistive technology and inclusion it makes a lasting impression on them. I have always been proud to be a mentor and role model for youth and adults with vision loss, and I continue to do what I can as the Director of the Perkins Braille & Talking Book Library to share information and open up opportunities for adults to reach their potential.
 
The Devastating Effects of the Pandemic 

Senator Harkin: One of the saddest set of numbers from COVID-19 has been the unusually high rate of deaths and infections for people with disabilities. Many of those infected were in some kind of communal living situation. There are many factors here, including pre-existing conditions and not getting information in an accessible format. This pandemic has exposed some real gaps in our communication. Public health experts have not been trained to work with people with disabilities.

Also, I am really fearful because of the data that people with disabilities may not be getting tested as much as they should. Also of concern is that there is some sort of value being placed on lives by healthcare providers. There should be no last in line for people with disabilities. At some point we will get over this virus. As we come out of it, I don’t want people with disabilities to be last in line for the jobs that become available.
 
Kim Charlson: I have a lot of pandemic-related disability examples. Most of mine are around social distancing and how hard that is for our community. I don’t see the red arrows or marks on the ground at the grocery store and don't always stop. They understand but are hesitant. It makes it challenging for people who are blind to go out and do things. Access to information about the pandemic can be difficult. Also, another issue is people wearing masks in public -- which they should be doing -- but I have family and friends who are experiencing hearing loss and they have serious problems communicating with people because they are not able to see people’s faces. All people with disabilities’ ability to communicate is impacted in some way.
 
On the Four Pillars of the ADA

Senator Harkin: There were four ADA goals that we focused on:

  1. Full participation
  2. Equal opportunity
  3. Independent living
  4. Economic self-sufficiency

On the first three, we are doing OK, but not on the fourth. The employment numbers aren’t changing and that is my focus in my retirement, getting businesses to change. When talking to businesses I usually start with a couple of examples. A 2019 Accenture study shows that companies that employ people with disabilities have better bottom lines than others. I also say, ‘do your customers and your bottom line a favor and hire people with disabilities.’ Finding employment also has a lot to do with training. Businesses must make their training programs accessible. And transportation is an issue, too. Driverless cars are coming! We need to make sure they are accessible to all people with disabilities. We need to continue to work on transportation, hardware and software, accessibility. 

Kim Charlson: I agree. And, my experience shows that ... because it is so hard to get a job as a person with a disability that there is a tendency to stay and do your best for the employer. Someone with a disability often gives extra loyalty. This can motivate the employer to hire more people with disabilities. Of my 30 staff at Perkins, 11 of them have a disability.
 
‘Just Wanting to Live a Normal Life’

Senator Harkin: Things are changing for the better, like the buildings and access. But what I think is most important is the change in attitude. Because of this younger ADA generation, people are more integrated and more understanding. A lot of the old myths have gone away. I remember talking in the late ’80s to a young woman with CP (cerebral palsy). I was going on and on. And she listened, and she said, ‘That’s all good, but all I really want to do is to be able to go out and buy a pair of shoes.’ A person with a disability just wants to live a normal life.

"I remember talking in the late ’80s to a young woman with cerebral palsy. I was going on and on. And she listened, and she said, ‘That’s all good, but all I really want to do is to be able to go out and buy a pair of shoes.’ A person with a disability just wants to live a normal life." - Senator Tom Harkin

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