The Hidden Value of Social Security Disability Insurance: Why It’s Important During Benefits Enrollment
Back in my day, life was much different than it is today. I acquired my disability, transverse myelitis, when I was 4.5 months old and became paralyzed from the waist down. About six years later, President George H. W. Bush made history when he signed the Americans with Disabilities Act into law on July 26, 1990. As a six year old, I do not remember this as a momentous occasion. But what I do remember is this.
As a young child, I thought everybody in the world had a disability and that it was a phase I would outgrow. I also thought in order to grow up and go to college, have a job, start a family, live on my own—I first had to learn how to walk. Why? Nearly every adult I knew could walk. Therefore, in my mind, I held this assumption that in order to gain access to these opportunities I had to make my disability disappear.
And then came the ADA.
Because of the ADA and its precursors, persons with disabilities are, in fact, able to hold jobs and be contributing members of society. I eventually was able to meet these adults with disabilities and learned I could grow up and be somebody despite having a disability.
I also learned the Americans with Disabilities Act had certain protections that applied to me when I started high school. I faced tremendous inaccessibility issues and discriminatory attitudes because of my disability. When I couldn’t resolve these challenges, I filed a civil rights lawsuit against my school district. Ultimately, my federal suit was one of the first where punitive and compensatory damages were awarded under the ADA in a public education setting. I did not fully appreciate exactly how precedent setting that was. That moment remains one of my proudest accomplishments.
Obtaining my high school diploma was my golden ticket to go on to university, eventually get my Ph.D., and join the working world. Ever since I was old enough to work, I always held at least one part-time job. As people with disabilities are often lumped into abysmal unemployment statistics or low levels of education, I am also proud of these accomplishments. That is not to say that access to employment and being welcomed as an employee with a disability did not come without its challenges.
As a teenager and young adult, I struggled the most with getting my foot in the door to show I was capable of performing the duties of whatever the job was. Many retail places turned me away when I simply asked for an application. I was unable to get “normal” early employment experiences such as babysitting, mowing lawns or shoveling snow because of my disability. But, I learned how to advocate for myself. What started as volunteer experiences eventually morphed into paid work with people who had grown to know me and see me for me. One of the best and most accessible jobs I ever held as a young adult was the summer I worked in a pre-school. Everything was my-sized!
Fast-forwarding to 2020, as I sit in my living room (where I have been self-quarantining for months), I think about how rapidly the world moved to virtual and online spaces, and figured it out. I think about the disabled individuals who had fought for these types of accommodations long before the pandemic. It is my hope that these flexible work options, virtual work platforms, curb-side service will stick around after we get through this too. These are examples of leveling the playing field and making the world of work more accessible for many disabled individuals. We have now proven that these things are possible!
These opportunities give me hope for the future generation. I love being able to interact with kids—some of whom recently acquired their disability, others who have been living with their disability for several years, and all of whom are significantly younger than me.
I was humbled and proud to see their world is different from mine when I was the same age. They could not imagine some of the experiences I shared with them and asked me if I knew these incidents were illegal! Today’s youth with disabilities are very aware there are laws protecting them. I was so happy to see they have big dreams, career goals and are empowered.
No, America is not perfect. There still is plenty of room for improvement and to, hopefully, change those appalling disability statistics plaguing our population. However, hearing a kid say he can get whatever job he wants with just a little support in place is exciting. So is talking with a teenager who graduated from college and is working at a law firm, or hearing a 13-year-old explain she educates her friends about why it’s hurtful and harmful to park in an accessible parking spot when you don’t have a placard or plate.
Even though my lawsuit and experiences took place after the ADA passed, as with any law, there is always a period of adjustment. It takes time for the letter of the law to become ingrained in people’s hearts and for senior leadership in schools, organizations and corporations to learn how the law applies to them. The signing of the ADA in 1990 granted civil rights to persons with disabilities but, as we know from similar movements in our U.S. history, the power and true effects of this equality are not felt overnight.
I am on the older end of what is considered the “ADA Generation” since the ADA was on the books as law the majority of my life. But this new generation of youth always had the ADA. There is no “pre-ADA” period for them.
The ADA generation is unique and they have a bubbling sense of expectation when it comes to disability rights. I like the phrase “sense of expectation” versus entitlement because it captures the optimism our youth with disabilities exudes. It captures the eye-roll I get from teenagers with disabilities who are quick to point out that “of course” they can be whatever they want to be and “of course” there are laws designed to promote access and civil rights.
Senator Harkin further explains the ADA generation as “those who have grown up since the ADA was passed [and] have high expectations of themselves and of our country. They expect to be part of their communities, to have a job, to be responsible for themselves, and to make their own decisions about their own lives. Their high expectations will ensure that our society continues to become more inclusive and more accessible.”
I am hopeful the ADA Generation will continue to forge ahead and carry the torch from the many pioneers who came before us. There are too many to list, but each and every one of these individuals is my hero. It is because of their work that I received an education, hold a job, live independently, and am able to interact with the world around me. We have certainly come a very long way, but there is still more ground to cover!
It is my hope that with the 30th anniversary of the ADA we, as a nation, will commit to meeting the needs of disabled Americans and not let disability be an afterthought. It is my hope that we will make strides on accessible housing and breaking down ableist barriers in healthcare and employment. It is my hope that the world will continue to become more accessible physically, technologically and socially.
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