for Technical Assistance
Connecting people with disabilities who are facing day-to-day barriers with those who have overcome them.
“Blindness is not a barrier to success, but a change in the way I succeed.” Sam was diagnosed with a degenerative retinal disease when he was six years old, but it didn’t become real to him until four or five years ago, in his early twenties, when he had to stop driving. This is his story.
Before I lost the ability to drive, I didn’t feel my condition had a major impact on my life. Such things as special placement in school (sitting close to the board in order to read what was on the board, for example) were simply minor adjustments. Losing my ability to drive was my first major life change. Over the last four years, it’s been a process of not only me coming to terms with the real implications of my blindness, but a reality check for others in my life, as well.
I have had to reassess what I think I can do with my life with a lack of vision. For me, my first years in college were really impractical. I studied philosophy and didn’t really have a firm direction. But in the process of trying to find a vocation moving forward that I could do with little or no vision motivated me to go to law school. In a lot of ways I grew up with the ADA. I’m almost 30 and so is the ADA. My mom works in Special Education so I’ve been very aware of the issues that face people with various types of impairments or disabilities, and since she was there to advocate for me, I received all the advantages the ADA has to offer.
I was working for a TV station when I first stopped driving, which is a very ironic kind of job for a blind person, but it forced me to reassess where I was going and, in a way, gave my life purpose. I’m really passionate about disability issues and I think the law is the way that society has decided to deal with those issues. It’s a messy process sometimes, but it has given me something to work toward; direction that I didn’t have before. I think I will have a leg up having a visual disability in a courtroom where most information is conveyed orally. I’ll be used to considering the material and understanding the spoken word a lot more than most people.
But as I said before, it has been a process. Basically, I have had to teach myself how to read again. I’m in the process of learning to use text-to-speech and screen readers where before I relied on magnification and high contrast. It’s a mixed blessing, though, because it’s the technical limitation that has also provided me a purpose going forward. I can understand the struggles others go through having a disability. It will allow me to relate to people a lot more in this field than I would have been able to otherwise. I understand the need for a law to intercede sometimes when people aren’t on their best behavior. I don’t feel the average person dislikes another person based on their disability, but people seem to have lower expectations of what disabled people can do. I’m guilty of that with myself. When I first started struggling with it five years ago, I put limitations on myself even when other people couldn’t tell I had a disability. It’s just kind of a negative bias that affects everyone with or without a disability. I think given time, people who have a disability and who have time to cope with their disability, no longer feel limited. At that point, it’s really society’s problem, that’s the real limitation and the reason I’m studying law. When someone is not limited, and society is trying to tell them they are, law is often their only recourse. I have met incredible people in the disability arena that are well informed, effective, and inspired in a way that I see very little in other areas of law. It’s rare to find an area of law where you can work and feel good about yourself all the time. That’s a rare blessing. It is what’s keeping me motivated despite having to come to terms with increasing physical limitations. I don’t even like describing them as a limitation anymore because they are not. They represent challenges to find different ways of accessing information that may carry with it certain burdens but also certain benefits.
My own perceived limitations. I thought I couldn’t do anything. I fell into the trap that I think a lot of people fall into - superimposing limitations, even when they didn’t exist, instead of trying to find other ways to do things, or other things that I could do. I became despaired. Over time, though, I’ve learned that there’s really nothing I can’t do; I just have to do it a different way.
First: My vision is deteriorating pretty rapidly now, whereas it was kind of gradual before. So I’m making that big leap from a visually impaired person who uses magnification and inversion in order to do things fundamentally in a visual way, to doing things via audio or text speech. I also have to relearn how to do every day physical things such as using a knife. It’s kind of important that you have a good grasp of using a knife, ha.
Second: Accessibility of information is something I care a lot about and it’s something that’s going to change going forward as we start to think of digital space as part of the real world. People need access to digital space just as much as they need access to the real world. So much of our life now is digital and that’s one burden that is not really a hurdle that I, as a visually impaired person, have to overcome, but rather a burden society has not overcome. We still think of the internet, data and information, as a bonus when really it’s become an essential part of our lives. I think that will be an area I’ll probably work within the law to improve. My legal work is to try to bring the same accessibility standards we’ve come to accept within the physical world into the digital world.
The ADA has had a huge impact in my life, especially in school. I was able to get increased text size on exams, placement toward the front of class, special lighting, and other accommodations. Such accommodations have been around as a result of the Rehabilitation Act and some other federal laws, but were strengthened by the ADA. The ADA made the concept of accommodation and universal access so omnipresent that people — even if they aren’t covered by the Rehabilitation Act and even if it’s a private school like I went to — became aware of those needs. Like I said, most people don’t dislike people with a disability; it’s that people do not actively realize what they can do to help people overcome physical limitations. So in my own life, my academic success has been, in a large part, due to the ADA, and I feel the ADA has made a change in the cultural understanding of disabilities.
Looking back, getting the ADA passed in the first place was a remarkable achievement. The struggles we’re facing today have been made so much easier by the incredible work of the people that laid the foundation. Their accomplishments will help the next generation, my generation, to move forward.
I think the main area where the ADA still has work to be done is employment. When you do an interview and someone first encounters a disability or impairment, it seems hard for them to overcome the perception that you will be somewhat of a burden.
There is a huge societal interest in resolving this issue because it’s more expensive both in terms of finance and integrity to keep people subservient and dependent on hand-outs. No one wants that, but there are all kinds of legal and cultural forces that keep people with disabilities from obtaining employment and that is of course a vital part of true independence. Honestly, I don’t know at this time what we can do to change the employment context, but I think just the numbers bear me out that there’s still a lot of work to be done in the employment arena.
My work as an intern here at ILRU has been really important. My summer here has given me a bigger picture of disabilities whereas before, for the most part, I have been dealing with visual issues and visual disability. Here, I’ve come to understand the ADA and how it interacts with the Fair Housing Act and housing programs and transportation issues and all those related but important issues. It’s been really pivotal in expanding the scope of my knowledge on disability issues in general. The ADA Amendments Act of 2008 is going to drastically change things by defining such things as breast cancer as a disability. I think this kind of broadening of the concept of disability to include impairment and bodily function will make it less of an ‘us vs them’ kind of idea and more an understanding by society that we’re all going to face disease, impairment, and hardship at some point, and those factors should not be determinative in our ability to enjoy life. I think going forward and broadening the coverage to people with diabetes and people with cognitive impairments will make it all-inclusive -- not just for “disabled” people asking for help, but for all people needing assistance in the future. That’s really what disability is; it’s not a distinct community, it’s everyone.
Peer support is very important. At ILRU I worked under an attorney who is very experienced and as a technical assistance provider has a visual impairment. I’ve also worked with other people with visual impairments in various capacities. All have been very beneficial to me at this time in my life. Before, I didn’t realize how much vision impacts everything including the ability to understand the spoken word. When you can’t see people’s faces, their gestures, their disposition, it changes the way you communicate, it makes it harder. My peers (those who also have a visual impairment), instinctively understand and are able to help remove those kind of barriers. They have shown me firsthand that blindness is not a barrier to success, but a change in the way I succeed. So, yes, it’s definitely important to find people that share your own struggles -- everyone should be understanding, but not everyone can understand.
Oh my goodness, this is a huge area for me. I’m amazed by the extent to which technology has made this transition easier for me. My great grandfather was blind at 30 and he had to have records shipped to him; the warehouse foundation is actually here in Houston. Records such as Reader’s Digest would take months to arrive and the range of materials was very limited. Today, access is basically limitless via the internet, and because of the latest technology, I have been able to deal with printed text a lot longer than my grandfather before me.
Going forward it’s kind of mind-boggling what’s going to happen. I mean they’ve got self-driving cars! It’s relatively new, but it will change the game of transportation; a primary barrier in engaging with society for some people with disabilities.
I think that every person who first experiences a disability goes through the same initial misperceptions that other people go through when they first meet that person. When you first see a limitation you can’t imagine how you will get beyond it. But I once heard that a limitation is the ultimate inspiration, and I strongly believe it. Until you experience limits, you cannot be truly creative because you haven’t had something that you’ve had to get beyond. Creativity, in a lot of ways, is inspired by recognizing those limitations.
Initially: It is such a disheartening experience and people can get de-motivated. My best advice is to find an advocacy organization or another person who has dealt with your disability. For example, in speaking with others, I came to terms with the fact that I wasn’t going to be able to handle the same course load going forward that I had in the past because of the transition period I am now going through. Finding people that have shared the same experience that you’re going through is essential. They know the hurdles you’re going to face before you ever get to them, and they’ll know the resources you’ll need and how best to proceed.
Know the law: Understanding your legal rights creates empowerment and motivation. I’m obviously inclined towards the legal profession so my first step was learning what the law required so I knew when someone wasn’t doing all that they could, would, or had to do. For instance, there are agencies that help people who are recently disabled either get an education or find work and they have rules and regulations just like everyone else. To a certain extent, those rules are absolutely essential for them to provide services. But I have also learned that those agencies have to make exception to even their own rules if those exceptions are necessary to accommodate someone with a disability.
Be your own advocate: That’s a huge thing. People will come with a set of tools that they’ve read about in a handbook and think they are applicable to your life, but no one knows how you experience your impairment, and the way you experience your impairment will change as you get used to it. All the resources in the world won’t get you anywhere if you don’t know how to use them to your benefit, and that’s something you have to figure out for yourself.
Do not isolate yourself: Not letting yourself become isolated is essential;
closing in is your natural inclination. You should open up and find people
and resources on the internet or where ever you need to go to start to engage
in society just like you did before your disability.
Don’t assume: Don’t assume you’re limited; try to find ways around your limitations. And don’t assume you can’t contribute just because you can’t contribute in the same way you did in the past.
Family and friends will encounter the disability almost as much as the person who has it. They are the ones that will respond to the limitations that are imposed by the disability before that person can deal with the limitations themselves. Don’t feel guilty if you become frustrated. Family and friends feel like they don’t have the right to feel this way. But no one sought the limitations and no one should feel guilty about the struggles. The key, though, is to move forward and find ways around it.
For me, I think it’s just the idea that in a complex society there’s really no perspective that’s not useful. A complex society is strong because of its complexity and diversity of perspective. It was just important for me to realize that I could still contribute even if I wasn’t going to drive. Driving is not an essential component of a being a productive member of society.
I was very happy and surprised by my performance during my first semester of law school. I had stopped driving and had been reckoning with the impending impairment and I wasn’t sure that I could do it. The pivotal turning point in my perception of myself was that even with the limitations I was facing, I could still perform with the best of them and it kind of vindicated the work I’d done to find ways around to use magnifiers and invert everything…all the tricks of the trade.
The challenge for all of us is to put ourselves out there in order to succeed. It ’s the silver lining.
Questions or comments may be sent to Sam by e-mailing the Southwest ADA and referencing ADA StoryTeller - Sam in the subject line.