Disability, Marriage and True Love in Brooklyn

Do you know what today is? Today is July 26, 2015. It is exactly 25 years since the signing of the Americans with Disabilities Act or ADA for short. It seems for every step forward we make as a species we take two steps back.


Every summer the Prospect Park Band Shell hosts free concerts. I have lived in the New York City area for fifteen years and never availed myself of this culturally-enriching opportunity. So upon hearing that one of my favorite artists was going to be playing this past Friday I thought it was time I added another well-rounded edge to my musical education and loaded into my Honda Element with my brother Ethan and jetted off to the big city.

I have a Love/Hate relationship with cities. For people in chairs, at least me anyway, they are like that one girl you love to love, you want to love… but… she has that one guy she’s crazy about who smacks her around, he leaves for weeks at a time, then when he shows up she drops everything and runs to him. There’s museums and theaters and restaurants and great music and when she calls with her bright lights and charm you run to her hoping for that big moment, only to hit the broken sidewalks and filthy puddles, high steps and cramped shops, restaurants without an accessible bathroom and Doormen who say “Oh, sure it’s right up the stairs!”.

Arriving home filthy and smelling like car exhaust, back sore from bouncing over potholes, it’s then you realize, you will always be stuck in the “Friend Zone”. Like all long and emotionally complex relationships it got me thinking and between two very interesting experiences while on said city excursion and the anniversary of the ADA I came to an interesting revelation.

Violation of ADA regulations

While I would never equate anybody’s ethnicity with a disability, I can safely say that the same system which marginalizes the races and social classes treats those with a disability the same way. Most Americans do not know that most colleges and universities, including so-called “Black Colleges” refuse to institute accessible infrastructure, alternative testing and even continued training for professors on how to assist students with disabilities! This is a total violation of ADA regulations. When I attended college myself I can remember being pushed by my brother through 100 yards of foot-deep, unploughed snow to get to class only to be told by the teacher “try to be on time next time”. How can anyone get an education like that?

Once through the traffic and the usual wait-in-line at the gate Ethan and I settled into our seats. As the crowd began to fill in I noticed a young couple seated in the reserved wheelchair seating. The girl had transferred from her wheelchair and was sitting in a regular chair. It was obvious she suffered from cerebral palsy, but not to the extent that she could not get around. They sat together smiling and chatting and after my brain was satisfied it had taken enough visual data it looked elsewhere. About twenty minutes later I noticed the two of them returning to their seats from somewhere like the restroom or merchandise table. This time I noticed that he too had cerebral palsy.

Marriage when disabled

This in and of itself is not remarkable, but these two devoted souls were determined to face the world together with the chance that their own government may never let them get married. Yes, you heard that right.

While legally, anyone can get married, those in the “disabled” community who are dependent on certain government programs that only exist through services like Medicaid and SSI can be penalized for tying the knot. This government believes if those like myself who are dependent on the physical assistance of another should be monitored and watched. If you cannot work (or rather employers refuse to hire you) and need daily care and you decide to marry the responsibility of your care in their eyes then falls to your spouse. They wash their hands of you. So tell me something… if I need help almost all day long when is my wife going to work? This puts us in the place where we are forced to make the choice between health coverage, coverage often providing life-saving services, and marriage.

“Why don’t you just get a job and buy your own coverage?”

I will take it a step further. Inevitably the person will come along and say, “Why don’t you just get a job and buy your own coverage?” Most private insurance companies will not cover 24/7 PCA assistance, so unless you have a job that pays you enough money to pay a PCA $35,000-$55,000 per year out-of-pocket, you have to utilize some form of government assistance. The system was not designed for upward mobility… or love either, but it’s just that. A system. Systems can be changed.

Laws can change. People can change, but it starts with people changing themselves first. Don’t see the walls that shut you in as prison walls, but mountains to be climbed. Stop seeing that chair or lack of education as one-way train to nowhere, but as an opportunity, a vehicle for change. Yes this discrimination is real. I believe we can change the world, but just not by laws or rules. You can’t just tell someone to stop being a racist or a bigot because it is illegal. He must see it in his heart, that it is wrong and know why it is fundamentally against the very life force that makes us human. Change comes from the heart. That is why we can change. Because within each of us is the power to do so.

Do something today.

Do it now. Change your point of view. Don’t have an education? Get a library card. Don’t have money? Share what food you have with someone who is hungry. Are you paralyzed? Get online and use it as chance to encourage others. Do you have a job, but it barely pays? Work harder, smarter, smile and laugh. Ring up those groceries like you’re a millionaire. Do have a little spare cash every month? Support blogs like these and research projects like the Reeves Big Idea. Do you have a lot of money? Pay it forward and invest in somebody else’s dream. If you don’t have anything? Give words, give words of life and encouragement. These are the things that supersede laws and governments. And they will last when this wheelchair I sit in is a rusted mass at the bottom of the ocean 500 years from now.

Civil Rights, ADA… they are written pages that mean nothing without the spirit of the men and women who believed in themselves enough to fight for them. It is the spirit of a thing that gives it life that makes it breathe. That spirit is colorless, genderless, it is neither sick nor paralyzed. It knows no border or creed or flag. The moment we recognize this is the moment we will love each other.

Thanks for reading.