25 Years of the ADA

In 1990 I was a three-year-old bundle of energy who was just beginning to understand the world around me. My personality was starting to show, which included taking joy in terrorizing my big sister (she wanted to flush me down the toilet – true story).  It was a blissful time. What I didn’t know was that hundreds of miles south of where I was growing up, a landmark civil rights bill was passed that would one day have a tremendous impact on my life.

On July 26, 1990 – 25 years ago today – the Americans with Disabilities Act was signed into law by President George H.W. Bush.

Embarrassingly, today was the first time that I read the actual language of the act. I always knew what it stood for, and what it meant, but to read it was a powerful experience. Here was a law that finally provided people with disabilities the right to employment and to public access without discrimination, and that offered a fair(er) chance at achieving the American Dream. Future buildings would have to be ADA compliant, ensuring equal access for all. It is because of these changes that I can live a productive life today. I can attend college and find gainful employment without thought given to my disability.

That said, it is not a perfect law. Unemployment is rampant for people with disabilities. Buildings built before the act was passed are still inaccessible. Many places that should be more accessible, for whatever reason, are not. There are numerous anecdotes from people who have encountered barriers in public places due to the carelessness and ignorance of others. There is still a long way to go for people with disabilities to feel truly equal in society. The stigma of disability continues to be pervasive.

However, to nitpick the law for its flaws is to miss the point entirely. The ADA was one colossal step in the right direction.

As I’ve said in previous posts, I can’t imagine what life was like for people with disabilities before this law was passed. I am forever indebted to the trailblazers who advocated for this law for years, people who even climbed the stairs of the Capitol one step at a time to get their point across. I had never heard of the Capitol Crawl before – reading about it gave me chills.

While researching the history of this law, I also encountered the opposition raised at the time to its passing, mainly how it would inconvenience business owners to have to make accommodations. For some – such as small business owners – they had a valid point. The costs of accommodation would be taxing on their bottom line. But to hear how others considered it an unnecessary burden and a compliance headache –  that makes me mad. The burden of disability is infinitely more difficult than the added burden of complying with the law. I wish I could have met the person who said that.

Rather than go on a rant, I’d rather commemorate this day by sharing a few examples of hope and inspiration I’ve come across during my journey into disability. The first is Ekso Bionics – one of many companies in the exoskeleton field who are seeking to end physical disability altogether. Paralyzed people are able to walk again with their technology; it is astounding. Even writing that sentence is mind-blowing. As their technology is enhanced and refined, there is no doubt in my mind that it will help me someday to keep walking.

Here is a TED talk about Ekso from 2011 that is one of my all-time favorite TED talks:

My second link is a feature that aired on ESPN on Father’s Day about Pete Frates.

Pete is a former Boston College baseball player battling ALS, who was instrumental in making the ALS Ice Bucket Challenge go viral. It is an honor to think that I go to the same school that he attended. Driving down Beacon Street every day, I pass by the baseball field right before pulling into Fulton Hall. I can’t help but think of him every day when I see the field. I know a couple people who played baseball with him over the years, and can attest to how great a person he is. He is a constant reminder to me of what a positive attitude can do no matter the odds one has to face.

Some of the strongest people I’ve met or have read about do not have any physical strength. Some have trouble talking, or are unable to talk on their own. For some, their disabilities are cognitive rather than physical, yet they overcome their obstacles just the same. To live with a disability on a daily basis, and do so triumphantly, without complaint, is one of the highest forms of living one can achieve. I haven’t quite gotten to that level yet, but I know I am closer because of the shining examples of others.

With Pete’s attitude, and with the help of a bill signed into law 25 years ago today, a full life is possible. Anything is possible.

People who were once paralyzed are now walking again. How cool is that?

MIT Media Lab

The MIT Media Lab is a place I had wanted to see for many years. Visiting was on my to-do list over winter break, however as I stared at my calendar, it was already January 7th and I hadn’t yet made it across the river. Class would start back up in five days, and once classes started, I knew deep down I probably wouldn’t make it over to Cambridge for quite awhile. If I didn’t go today, I probably wouldn’t go before break ended.

For those not familiar with the Media Lab, it is more or less a giant research lab. According to their website, The MIT Media Lab “goes beyond known boundaries and disciplines, encouraging the most unconventional mixing and matching of seemingly disparate research areas.” It combines the expertise of numerous fields under one roof, ranging from bionics to electrical engineering to computer science. It is truly on the cutting edge of innovation throughout the world. If you could summarize MIT in one building, this would be it.

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Lounge area on the 3rd floor of the Media Lab

Naturally, over the last few years, I had been curious to know if this type of place could create something that could improve my life, in any possible way. There had to be some sort of research going on that could somehow help me. Then one day I got my answer. I had stumbled upon a TED Talk by Hugh Herr, who runs the MIT Biomechatronics Lab on the second floor of the building. A double amputee below the leg, Herr walks around on cutting edge prosthetic legs, and has committed his career to building comfortable, better-performing limbs, in order to make them feel as close to the real thing as possible. Gone are the days of peg legs and immobile titanium rods, that’s for sure.

What captivated me about the talk occurred midway through the presentation, when he showed a quick video sequence of a man testing out an exoskeleton, a machine that could augment the strength of one’s legs. It would be perfect for someone with muscle weakness.

I pressed rewind and watched it again. And again. And again. This is what I needed, I thought. Even better, they were located right in my backyard.

After months of trying to get an “in” – they don’t accept unsolicited requests to tour the lab due to time constraints and the volume of requests – I was connected to a PhD student, Benny, who offered to give me a tour of the lab.

When I got to the Media Lab I walked into a large, open atrium filled with natural light that happened to shine particularly bright that day. I walked over to what I thought was the map of the building, only instead it was a touch screen asking where I wanted to go. This is MIT after all; if the map can’t be interactive and touch-enabled, it doesn’t belong in the lobby. After a few seconds I found where I needed to go and proceeded to the second floor.

I met up with Benny and got a tour of the lab. It was a very interesting visual experience, and definitely not a place for the claustrophobic. There were machines and spare parts everywhere. It was hard to move around without bumping into a wooden plank or a computer or, you know, a gigantic 3D printer. To be fair, they had just combined spaces with another lab and had yet to move everything to its final resting place. Nonetheless, it was an exciting environment to be in.

Benny took me on a tour, showing the history of prosthetics, from hard plastic limbs without any flexibility to customized limbs based on the individual’s particular needs. The 3D printer I bumped into? It was printing a customized sleeve made out of a flexible material that would be placed on a human, then slipped into the prosthetic limb for maximum comfort and performance. It was incredible to see the progress in the field in such a short period of time. Soon, we are going to have prosthetic limbs that perform equivalently to a human’s real limb.

Towards the end of the tour I got a glimpse at the area where they tested out the exoskeleton in the TED Talk video – the reason I had been so interested in the lab in the first place. Going in I didn’t know what to expect, however I secretly hoped that there might be something I could try on. My expectations were quickly tempered – I found out it is still in the rudimentary stages, and unfortunately what they have now is below the knee, which wouldn’t be of help to me. That said, the equipment and resources available to them suggest that they aren’t far from a breakthrough in the coming years.

I left the lab with a greater sense of the time it is going to take before this type of technology can really catch on. It was good to know, but at the same time, it pushes the timeline out that much more before something is developed that can help me with walking. As I’ve reminded myself thousands of times, like a parent scolding a child, I just have to be patient.

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Zig-zagging stairs off the main atrium


Besides, I didn’t have much time to let myself sulk, as I had another meeting at 2pm. This meeting was with William Li, a PhD student and lecturer for a class that I participated in as a client in the fall called Principles and Practice of Assistive Technology (PPAT). I had an idea come to me during a stressful apartment hunt last year for a website that showed relevant accessibility information for buildings, so that someone with a disability could easily plan a trip safely and with minimal aggravation.

William and I discussed some follow-ups on how to make this website a reality. I had worked with some MIT computer science undergrads last semester and created a working prototype, however it is far from done. It will take a lot of work to turn it into a living, breathing site, and I am already quite overwhelmed by the demands of the upcoming semester. But it is an idea that I believe is worthwhile, and I refuse to let it die.

Before I knew it the sun was starting to go down after a productive afternoon. As I left the Media Lab, the sun shone its last remaining rays brightly over the atrium. I looked up at the floors above, and marveled at the possibilities of the future being developed all around me. The research that could have a positive impact on my life never happens linearly, and on a selfish level, it never progresses as fast as I would like, whether the research is medicinal or mechanical. But it progresses, at its own pace, each discovery building on the last. With the technology and information available today, research is progressing faster and faster, thanks to innovative, collaborative efforts such as the Media Lab.

The time will come where all this groundbreaking research will positively impact my life. In the meantime, I just have to be patient.

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Atrium as the sun begins to set.