Members of the MDA community share their thoughts about the Americans with Disabilities Act and its impact on their lives
The Americans with Disabilities Act — the ADA — turned 20 on July 26, 2010. How has this landmark civil rights legislation affected your daily life? Have you experienced discrimination in employment, in access or in attitude? What are some of the best changes that have occurred thanks to the ADA — and where do we still need to improve?
Several members of the MDA National Task Force on Public Awareness took time from their busy schedules to ponder these questions. In addition, Katrina Gossett shares how she consulted the ADA to improve accessibility at a new bar in her neighborhood.
Below are comments about the impact of the ADA from:
Bradley Stephenson, 38, San Antonio, Texas, Becker muscular dystrophy
Jan Blaustone, 54, Nashville, Tenn., limb-girdle muscular dystrophy
William Altaffer, 52, Tucson, Ariz., spinal muscular atrophy
Frank Lombardi, 52, Leesburg, Va., Charcot-Marie-Tooth disease
Katrina Gossett, 25, Indianapolis, Ind., spinal muscular atrophy
Pinalben "Pinky" Patel, 28, Paducah, Ky., Friedreich's ataxia
Stephenson, 38, of San Antonio, Tex., is an attorney who specializes in estate planning. As well as being very active in MDA advocacy efforts, he is a member of the NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases) Advisory Council. Stephenson has Becker muscular dystrophy.
|"The ADA has created a mind set that accessibility is important and must be complied with."
The ADA has made a huge difference in terms of access. First, it is great that all new construction has to comply, as that gets designers/builders/architects at least thinking about access from the beginning.
In terms of public accommodation, it is so helpful to know that most restaurants, travel, services, etc., have accessible ramps and bathrooms etc. It provides a level of stability for someone who faces mobility challenges. Most of the time, you know that certain things are going to be accessible (government buildings/schools/restaurants/theaters/stadiums etc). Also, it makes using public transport easier. The ADA has created a new mind set that accessibility is important and must be complied with.
Have you ever filed a formal or informal ADA complaint due to lack of access or disability discrimination? How did it turn out?
No, though I have contemplated it. One thing I have found is that people are willing to assist you or work with you if you ask, so that a complaint is not necessary. For example, a dry cleaner will bring out stuff to you car. A bank with no ramp will let you transact through the drive-thru. A bakery with no ramp will provide curbside service.
Another example: Our City Hall in the small community I live in has one area that is not accessible. Unfortunately, they use it for our precinct meetings on primary election day. But I was able to attend via a door that opens [a special accommodation]. So — while technically I could start the complaint process — sometimes it is easier to work with people/the situation and make it work.
Second, sometimes the aggravation/confrontation/potential consequences are not worth it. As you know, I believe the first remedy under ADA is to work with the entity that is not in compliance. That takes time and effort, and potentially makes the person making the complaint viewed as someone who is causing trouble for the owner. For example, in San Antonio, I know at least 20 places where ADA is not complied with (some government/some businesses). But I have not tried to get things changed. Some factors could include thinking someone else will do it, not wanting to hassle with it, not wanting to put up with the confrontation, worrying about being seen as a whiner/troublemaker etc.
What impact have you seen in employment of people with disabilities thanks to the ADA?
I suspect that ADA has resulted in the employment of more individuals with disabilities overall. But I suspect this is due more to awareness of disabilities/the changing attitude towards people with disabilities and the law perhaps has been marginally successful here.
Looking at my own personal experience in seeking employment, however, clearly discrimination against individuals with disabilities happens everyday. As with most people with disabilities, I have been discriminated again on the basis of that. Seeking remedy in the law, however, especially in a relatively small community or field, could potentially harm a reputation and cause more problems than it solves for the individual.
What words of wisdom do you have for others with disabilities about the ADA?
Be happy that you live in the U.S., as the ADA has made our country the most accessible in the world. When you encounter problems, first see if there is a solution short of invoking the ADA or demanding immediate changes. When appropriate, seek to enforce the ADA to help yourself and others.
|"Enforcement of existing law is lacking."
Blaustone, 54, of Nashville, Tenn., has limb-girdle muscular dystrophy. She is a nationally known author, artist and speaker who focuses on family life and disability issues. She actively supports MDA activities, including volunteering at MDA summer camps and serving as a motivational speaker at MDA functions and support groups.
My daily impact of ADA is that when I have to be at an appointment in a government building, I no longer fear lack of access.
I still have that fear in other public places however. Enforcement of existing law is lacking. I am sure it's better in some parts of the country than others.
Altaffer, 52, Tucson, Ariz., has spinal muscular atrophy type 3. He is an attorney deeply involved in advocating for the rights of people with disabilities, including championing legislation that requires single-family home construction to meet minimum accessibility requirements.
|"These features [of the ADA] have allowed those who were once hidden away from view to become naturally integrated into society."
You ask how the ADA has impacted daily life. On the one hand, after 20 years, it is very nice that the requirements of the law have become a part of the routine of everyday American life. Almost every parking lot has a disabled space and every curb has a ramp. What had been expensive and out-of-the-ordinary features are now common and preferred by people with, or without, disabilities. This normalcy is a huge improvement.
These features have allowed those who were once hidden away from view to become naturally integrated into society.
On the other hand, there is a long way to go before even a semblance of equal rights is achieved. The ADA is a platform on which more progressive legislation and policies for people with disabilities can be based. It is an important step in our Nation's incremental process of increasing Human and Civil Rights.
What has been the impact of the ADA on employment?
I think the results have been disappointing.
I think we did need the ADA as a statement that this nation's public policy is one of inclusion. However, it seems to me that many MDA clients derive a more immediate benefit from other federal laws or programs then they do from the ADA.
Certainly Medicare and Medicaid and the IDEA (Individuals with Disabilities Education Act) are vitally important to people with disabilities. As you know, my current interest is in housing accessibility, upon which the ADA has had a limited impact.
Lombardi, 52, from Leesburg, Va., is an upper-level security specialist for Lockheed-Martin. Lombardi has been very active in nearly every aspect of MDA community activities for many years, including fundraising, summer camp and support groups. He has Charcot-Marie-Tooth disease.
The ADA has had a positive impact on my life in many ways, however the two that stand out for me personally are related to the employment protections and reasonable workplace accommodations mandated by the ADA. In relation to my community advocacy activities, the ADA has been instrumental in helping me to persuade or force non-compliant businesses and others to comply.
What impact have you seen in employment of people with disabilities thanks to the ADA?
|"I remember being discriminated against and feeling as though I had no course for action. [The ADA] is a living breathing document ... it serves as the disabled communities’ Declaration of Independence and we should treat as such! ... Never give up! Never give in! Get involved!"
Personally, I consider myself fortunate to have worked the last 23 years for Lockheed Martin. Fortunate in that, as my medical condition has progressed or changed over the past 12 years or so, they have been more than willing to not only meet the letter of ADA law, but in many cases they voluntarily exceeded it. ADA has served as a great baseline benchmark of reasonable accommodations for use by our office.
Other people with disabilities that I have interfaced with both professionally and through community activities articulated similar experiences as mine and others have stated that if it were not for the ADA, they would likely be unemployed and on Social Security Disability, (that’s if they could get it!).
Did we really need the ADA?
YES! I am old enough to remember the days before ADA and I’m sorry to say that I also remember being discriminated against and feeling as though I had no course for action.
Essentially, my early recollections of being discriminated against occurred during grade school and high school [in the late 1960s]. In grade school many of my teachers and school administrators treated me differently. Many of my peers teased me relentlessly, assaulted me in the school yard in the presence of my teachers, with no repercussions.
I was considered an easy mark based primarily on my physical appearance. While I was not diagnosed until my late 30s, I have always exhibited a majority of the physical characteristics attributable to CMT, such as severe drop foot, atrophy in hands and feet, unnatural gait, spinal curvature, shoulder hunching, balance issues, constantly falling, etc.
Throughout my adolescence [in the early-to-mid 1970s], I was turned down for many different jobs. These were jobs that I knew that I could do but was told by employers that they didn't think that I could do the jobs because of my “obvious physical problems.”
This was especially true when pre-employment physical examinations were required. One instance occurred at age 16, when I applied for a job. During my physical examination, the doctor told me that I was unfit to work in any position in his opinion, because of my “many many physical deformities.” I remember how hurt and discouraged I was. When I got home and told my mother about what the doctor said, she just cried.
Even though 40 years or so have passed since these incidents occurred, I still recall the emotional pain, fear and anger that they caused at the time. Looking back though, I tend to believe that the discriminatory things that happened to me then and throughout my life, were designed to help me to find the strengths necessary not only to survive, but to develop the fortitude to get involved late in life and work to make a difference for all people with disabilities, their families and caregivers.
Has the ADA been an effective law?
I feel that is has been effective for the most part by providing some very important core protections for people with disabilities. However, being a federally mandated and controlled program, effective and viable changes important to the disabled community at large tend to take forever to become law.
Additionally, while improvements have occurred over the past couple of years, people with disabilities are often under-represented at both the local and federal political levels.
As a group, we are often required to expend an inordinate amount of time justifying our needs and rights under the law. Unfortunately, the business of political posturing and deal making often affects the quality of ADA amendments and other changes in the law. This in part is why as Americans and as voters, we need to unite and continue to make our voices heard.
What words of wisdom do you have for others with disabilities about the ADA?
Never give up! Never give in! Get involved!
Effective change related to issues of relevance to the disabled community in this country does not magically occur, but usually only gets attention when we flex our collective voices. In my opinion, a lot has to do with perspective honestly. Both as individuals and as a community, we determine our future. We have responsibility to each other, our children and grandchildren, to influence and effect change wherever necessary. Attitudinal barriers continue to be the greatest of barriers to people with disability. No physical change can occur without a change in attitude or perspective. We have to power; we just need to use it!
What remains to be done?
Many things still need to be done. I don’t feel qualified enough at this point to reference any specific item, however, ADA is a living breathing document. In many ways I feel that it serves as the disabled communities’ Declaration of Independence and we should treat as such!
Gossett, 25, is an attorney in Indianapolis. She has spinal muscular atrophy.
Many businesses want to comply with the ADA and other accessibility laws, but many do not know how. That is why it is our job as consumers with disabilities to inform them of their obligations. This is not always a fun job for those who, like me, prefer to avoid confrontation. But if we want to be responsible citizens who stand up for our own rights and the rights of others, we need to keep the local businesses we wheel past every day on their toes.
|"Many 'experts' do not know the law, so it is our job to learn it and share it."
Recently, I experienced this need for self advocacy first hand. A brand-new bar opened up in my neighborhood. I had been looking forward to its opening for months. Unfortunately, when I first went inside, I noticed that nearly half of the bar was up a step, with no ramp in sight. I was very disappointed.
My disappointment quickly turned to determination, and I decided to make a change. I knew the owner of the bar, and I knew he was a good guy who would never want to exclude people or violate any accessibility laws, so I decided to send him an informal e-mail.
Before e-mailing him, I did my homework, and made sure that having an inaccessible raised level in a new bar would violate the ADA. I found the law and the regulations online, and sure enough, new bars need to make raised levels accessible if they are more than 33 percent of the seating area or if they're different from the other seating. This area was both.
So I wrote the bar owner and told him that the bar was not in compliance with the ADA. He was surprised to hear this because he had architects and builders whom he trusted to know the law, and a city inspector approved the plans. This is one thing I am learning as a self-advocate: Many "experts" do not know the law, so it is our job to learn it and share it.
When I talked to him about the law and the difficulties a person in a wheelchair would have at the bar, he agreed to make the changes. He does not believe the bar has violated the ADA, but wants to make the bar more welcoming to everyone. We will have to agree to disagree on that one point, but altogether we have come to a happy solution for everyone.
Thanks to some determination, some research, and a little step outside my comfort zone, I will soon be able to enjoy a cocktail anywhere my friends want to sit at our neighborhood bar.
Pinalben “Pinky” Patel, 28, is a freelance writer living in Paducah, Ky. A graduate of Murray State University in Murray, Ky., with a degree in journalism, Patel has Friedreich’s ataxia. Visit her website at http://pinkdreams_1.tripod.com.
A social worker asked me to write a speech about the benefits of the Americans with Disabilities Act (ADA) to present at a rally celebrating its anniversary. When I discussed this with my friends with disabilities, some of their replies shocked me. Many of them agreed with me that the ADA has been very useful for people with disabilities but still could be improved. Some, however, believed the ADA had no positive effects and that annoyed me a little. I thought they were being ungrateful at first, but I realized that they just hadn’t experienced living as a person with a disability before the ADA.
The ADA has always been about giving equal access to people with disabilities. Before the ADA, people with disabilities were not able to participate in the community unless they were rich enough to have a few attendants around all the time to lift them over steps or stairs to get into buildings.
My disability — Friedreich's ataxia — is degenerative so I was almost able-bodied before the days of the ADA. And I was only 9 years old when the ADA came into law. I was born in India. My family and I came to the USA when I was 4 years old, but we had to go back to India when I was about 12 years old.
|"I know I would not have gotten to study if it were not for the ADA."
It was three years later in India when I realized the importance of the ADA. My disability had progressed and I needed to use a wheelchair. Most schools around where I lived were a couple of stories high without elevators and they had seven or eight steps to the first floor — without ramps! I had to drop out of school. Luckily my family got a chance to come back to the USA a couple of years later. I started school again after I got back, and today I am a writer with a journalism degree from Murray State University!
I know I would not have gotten to study if it weren't for the ADA. I am grateful to leaders such as Ed Roberts, Gini Laurie and Justin Dart, who pushed for the ADA to be signed into law. I can go many places where I don't have to be lifted, like stores, restaurants, theaters. I remember the last time I visited India, where there is nothing equivalent to the ADA — I did my shopping from the car. There was only one store I could go into but I still had to be lifted for one step. That store had two floors and I didn't even get to go upstairs!
Yes, the accommodations required by the ADA make our lives easier. But there are so many more improvements to be made. It has been 20 years since the ADA and there are still many inaccessible places. Some politicians and candidates still want to exempt private businesses from the ADA requirements. That's not how it should be, especially 20 years later. There are ways to retain a building's authenticity while making it accessible.
Many architects still think that putting grab bars in bathroom stalls meant for able-bodied people makes them accessible! Those architects should spend a couple of days in a power wheelchair or consult with a wheelchair user before remodeling. Installation costs shouldn't be an issue for successful businesses, so don't be afraid to complain if access is not available.
The ADA is a central civil rights law for people with disabilities. We are a protected group of people and the largest minority in this country. In its 20 years, some politicians, the Supreme Court and others tried to weaken the ADA. Even though the ADA has made it illegal to deny a person a job because of a disability, there are still far more educated, unemployed disabled people than able-bodied people. We need to keep fighting for our rights, and we need to stand up to the injustice and discrimination.