A Forgotten Minority

In many ways, the current era is one of progressive change. A black man is in the White House, a Latina woman has a position on our Supreme Court, and, in spite of some major setbacks in the marriage arena, sexual acceptance is also more widespread. While it would be too short-sighted to point to these achievements as then end of racism or inequality, there is certainly plenty of reasons to be optimistic. Sadly this growing sense of empowerment does not extend to all members of society, there undoubtedly remain, in this country and worldwide, a number of forgotten minorities. Among them is the broadly defined "disabled" community.

Given this broad definition, I can only speak for a specific sub-set of which I am a member. In my case I speak of the plight of those with permanent visible physical disabilities centered primarily around mobility difficulties. I was born with Cerebral Palsy and since the age of 4 have relied on the use of wheelchair. For about the last decade I have relied in a motorized wheelchair specifically.My life has not been all bad of course, I am blessed with a very supportive family and close friends, I live on my own, and am Ivy League educated and currently am pursuing a Masters Degree. In spite of these blessings however, I am everyday faced with the physical and emotional mountain of coping with a city and world at large that remains largely unprepared for and generally uninterested in challenges of the disabled.

These challenges begin at home so to speak. By this I mean with the wheelchairs themselves. First, they are expensive; the model I use for example costs around $14,000. Yes, insurance does exist, but as with most things, they cover very little. If it was up to insurance, they would seem to view a kitchen chair with bicycle wheels as sufficient for a "normal life (while I'm on the subject of insurance, they also will not pay for long term physical therapy under the logic that I am not going to get any better. ute, huh?) . The shocker here is that a kitchen chair with bicycle wheels doesn't really do the trick and so, if you do desire that elusive normal life you have to come up with 14K all by yourself (or with your family's help if you are lucky). The good news here is: once you shell out the dough for the chair you get a piece of equipment that works like a charm......for about 2-3 months.

In the about 3 years or so that I have had my current wheelchair, I have averaged a major problem 3 to 4 times a year by conservative estimate. These problems have included such things as, the controller falling off, foot rests cracking, batteries burning out, a wheel falling off (yes, I said wheel), and a host of additional electrical problems. These issues can range from minor annoyances to things that have left me immobile on sidewalks several miles from my apartment (a grateful nod should be paid here to the NYPD, who while they have been perplexed by the situation, have helped me home more than once, which is no small feat considering the chair weighs about 500 pounds all told).

Once you've broken down and are lucky enough to make it to a safe place, there remains the problem of fixing the chair. While the wheelchair mechanics that do exist are dedicated and hardworking, there are just too few of them and they have no emergency and/or 24 hour capability. To the best of my knowledge there 3 companies that have the ability to service my equipment and they are located in Flushing Queens, Fort Totten Queens, and Ronkonkoma Long Island respectively. Of the one company that I have used that does home pick-up, they only have the resources to do so once a week. While my chair is being fixed I have no choice but to survive in back-up or loaner chairs, that while they allow for basic mobility and quality of life, the major sacrifices in independence are both physically and emotionally draining. Naturally, none of this happens for free and over the years I think it is reasonable to say I have paid for my wheelchair at least twice. My most recent still on-going electrical problem has required three trips to the manufacturer and thousands of dollars. If any other type of company had a comparable lack of success rate there would be safeguards and calls for over sight (think Lemming laws). When it comes to wheelchairs, you are the mercy of a deeply flawed system.

If, on a good day, I have the good fortune of being able to leave my home, I dive head first into the NYC transit system. Of the major methods of transport available in said city, only the bus system is fully accessible. The subway has some stations that are accessible but they are few and far between and (from what I hear) the elevators providing this access are rarely serviced. In my 6 years of living in the city, I have used the subway one time during which my chair got stuck between the gap and I had to rely on my friends and a Good Samaritan or two to pull me onto the train. While I have faith that many a good Samaritans still exist, feeling as though you may be forced to rely on them is of little comfort.

About now you may be thinking "what about those neat little taxi's with the ramps I have seen around," Once again they exist, but largely cease to be practical for many reasons. For one, they are impossible to hail from the street because you cannot tell whether they are accessible until they are right on top of you. Secondly if you do hail them you may be told, as I have on one occasion, by the driver that he "can't take a wheelchair," as I stare at the handicapped logo on the side door. While I relieved some stress in this situation by utilizing my middle finger and a few four letter words, the fact remained I still lacked a ride uptown.

The TLC claims to have a number that you can call and reserve an accessible taxi ahead of time; however, this system has only worked a small percentage of the time I have used it. Amazingly, (as I was told by a cab driver, who both claimed to be high up in the union and a supporter of accessible taxis), these requests are sent out over a blackberry system that not all drivers in the accessible cabs have access to, and these drivers reserve the right to refuse these jobs up to twice a shift and the refusal of more than two results in a type of sanction ticket which is little more than symbolic. In the end you can request a cab but it’s a crap shoot as to whether one shows up. As recently as last night, I waited for a cab that never came, and thus was unable to attend a belated birthday party for my sister.

Essentially if I want to get somewhere, I am left with using my wheelchair or taking the bus. All NYC buses are equipped with ramps or lifts but also remain limited. Buses have the capacity to transport two wheelchairs at a time so if a couple old ladies beat me to it, I am left with no choice but to wait for the next bus, which depending on traffic can take between 15-40 minutes. The traffic issue (which I know is unavoidable) makes it so that any trip to an outer borough takes so long it is not practical. Lastly, not all buses run all night and so if I desire to have a social life that extends beyond midnight (which I think is a fair request with me being a 25 year old single male) you either stay local or take your chances. Oh and if it snows, forget it.

What is contained above is not intended to be an exercise in woe or even necessarily as representative of the problems of all disabled folks, instead it is merely designed to be a glimpse into the problems that face the disabled such as myself. These scenarios described in my "glimpse" have caused me not only to miss out on things like social functions, but also things like work, school, and job interviews. Reality also remains such that the problems are even deeper than described here. The Americans with Disabilities Act remains known more for its loop holes than benefits thus leaving me with countless buildings I am unable to enter or, once inside, left without a bathroom facility. The point of setting this piece against the backdrop of the strides represented by Obama and Sotamayor is that if such inequalities described here were the result of something like religion or race, outcry would be fierce as opposed to largely non-existent. In the end, I am left to speculate that this lack of outrage is the primary difference between a building that lacks a wheelchair ramps and one that has "Whites Only" scrawled on ts front door.Some of you who were unaware of these problems may be tempted to offer some sort of apology for not having been aware, and the truth is I need not your apologies, but instead, I implore your future vigilance and support. Remember these issues and don't allow them to continue. I ask you to forward these words to all friends and families or places of influence such as politicians and newspapers.

I cannot crusade alone so help me stand for those who can't........