graphic by Autumn Meyer

The Americans with Disabilities Act passed in 1990, but the work of disabilities advocates continues more than a quarter century later.

Nadir Mehta is getting concerned. He’s walking along a bike path in West Des Moines, Iowa. It’s far from a sketchy place for a stroll. This is the suburbs, after all. But Mehta has another issue, namely that the sun is about to set — and he’s legally blind. The poorly lit sidewalks make him worry about getting lost. If the path had better lighting, he could find his way home with the limited sight he has.

As is, Mehta is worried, so much so that he’s decided to take action. He’s running for city council.

“I feel like I need to be a voice and to be able to not just stand still,” Mehta says. “The only way that we can get some sort of recognition, not to just have someone feel sorry for us, is through advocacy. It’s about making sure that people are aware of disability.”

Unsurprisingly, part of Mehta’s platform is to help improve the lives of people with impaired vision. He wants more lights on the walking and bike paths in West Des Moines, and is requesting that government websites improve their accessibility.

The Past and Future of the ADA

People like Mehta are currently fighting to make sure the rights they gained in 1990 from the Americans with Disabilities Act stay the same. The ADA was the first major U.S. law that protected people with disabilities against discrimination in all areas of public life including jobs, schools, transportation and any community spaces that are open to the general public.

There are five sections of the law: equal employment opportunities, nondiscrimination on the basis of disability in state and local government services, nondiscrimination in public accommodations, telecommunications and a miscellaneous section.

But the law could be facing major changes. In January of 2017, Ted Poe (R-TX) introduced the Education and Reform Act. The bill, if passed, would dramatically affect the ADA and the protections it provides by changing the law in such a way that people with disabilities could soon get denied their rights to public places.

Title III of the ADA — the one that requires that all public establishments allow easy access for people with disabilities — would be impacted the most.

If a business doesn’t follow this requirement, the person making the complaint can take it up with the business directly, make a complaint with the Department of Justice or file a lawsuit. The proposed change could potentially slow down this process and prevent fast access to some services.

The revision proposed in the Education and Reform Act would allow businesses to ignore ADA requirements until someone makes a complaint. But first, the person who complained has to complete a long and detailed complaint form. Even after this process, the business is only required to make “‘substantial progress’ in removing the barrier,” according to the American Civil Liberties Union.

These possible changes have advocates like Mehta worried about the future.

Beyond the ADA

disability advocacy

Michael Hoenig, Council on Disability Awareness co-chair.

Advocates are fighting legislation, like the possible changes to the ADA, while also seeking increased recognition. Part of their mission is helping people understand disabilities.

Michael Hoenig serves as a co-chair for the Council on Disability Awareness at the University of Iowa. The council is made up of students, staff and faculty who come together and talk about disability issues. One of its main initiatives is encouraging an “I Am” mindset. The group is encouraging people to use the words “I Am,” helping participants see themselves as more than just someone with a disability. “I Am a student” and “I Am a scientist” are phrases used to shine light onto who they are as a person, not solely on the fact that they have a disability.

The program encourages people with disabilities and those around them to identify the value in themselves. Hoening says he sees a need for this type of discussion all the time. “People with disabilities are like anyone else,” Hoenig says. “Disability is not something to fear … So many people with disabilities still feel disenfranchised. We all need to do our part in advocating for issues like healthcare and transportation that affect quite a lot of people.”

Disability advocating is intended to promote positive awareness of the disabled community. Advocates endorse disabled people’s ability to live normal lives.

According to the 2012 census, 19 percent of Americans have disabilities. This makes them one of the largest minority groups in the country.

“Whether people are conscious of it or not, they are constantly working with people with disabilities,” says Reyma McCoy McDeid, the executive director at the Central Iowa Center for Independent Living. “A lot of people with disabilities have an invisible disability, and they don’t disclose that.”

“Disability is not something to fear … So many people with disabilities still feel disenfranchised.”

disability advocacy

Emmanuel Smith, Disability Rights Iowa social security advocate

McDeid and CICIL’s mission is to empower people with disabilities to control their lives and become more integrated into their communities. They do this through life skills training and advocacy.

Able-bodied people often feel like they need to help those with disabilities, which is not always the case.

Emmanuel Smith works as a Protection and Advocacy for Beneficiaries of Social Security advocate for Disability Rights IOWA, a law center that aims to protect people with disabilities.

“One of the things I try to focus on is the presumption that people help people with disabilities in the community because they’re doing them a favor,” says Smith. “That we’re helping people with disabilities by letting them work or letting them live in the community.”

The goal for advocates like Smith is really about trying to inform the public about the lives of people with disabilities.

‘The Final Frontier’

disability advocacy

Matthew Roderick, Unite to Fight Paralysis executive director

In addition to education, advocates also require funding to help improve the lives of people with disabilities. Disability research is often funded by the government, but that funding is rarely enough.

Matthew Roderick is the executive director of Unite to Fight Paralysis, a spinal cord injury organization based in Minnesota. Roderick learned how little government funding is actually provided for spinal cord injury research after his son was injured in a bodysurfing accident.

“The lack of funding is surprising to our legislators who think we give so much money out of our state budget to the university system,” Roderick says. “But then we explain to them that, more often than not, an academic institution is not directly funding that research.”

“The disability rights act is the final frontier as far as civil rights is concerned.”

Roderick’s advocacy work is about proving the cause is worthwhile. He strives to make that known to the people in the spinal cord injury community.

“We’re expanding this legislative agenda state by state to mobilize the spinal cord injury community, to recognize that they can have an impact on what kind of research we fund,” Roderick says. “Specifically, they can have a voice at the table making that decision, which is what we’ve been pursuing.”

These advocates are fighting an ongoing battle to help people with disabilities get the recognition they need both in funding and in society.

“The disability rights act is the final frontier as far as civil rights is concerned,” says McDeid. “It’s the piece of the civil rights puzzle that is most overlooked.”