Now that I'm Down, How do I stay Up?

I lost my mobility during Covid, when we were locked down, in fact my mobility had been slipping away and Covid was the straw that broke this camels back….so to speak. I am not certain that I was prepared for all the losses that not being able to walk encompassed. You lose agency over your ability to get from point a to point b, and you need some help, like having someone help you with your chair when you get to the respective place you are going. I have fortunately been able to drive as my right leg has a lot of strength and range of motion, still once I get to whatever location, I need assistance either having an electric cart brought to me or someone who can lift my 45 pound wheelchair out of my trunk and deliver my chair to my door so I can transfer onto my chair and get rolling.

I realize how fortunate I am to be able to bear weight on my leg and to be able to transfer from here to there. This simple aspect make it bearable for me not to be ambulatory, for the simple fact that I am still able to perform all my daily activities of living, to get dressed, do my hair, go to the bathroom, shower, cook, clean, make my bed, and fortunately, I am able to drive, using my leg and not hand controls. It is really strange, that despite my “handicapabilities”, negotiating daily life is difficult. You would think that with Americans With Disabilities Act, laws designed to pave the way for access for those people living with disabilities, getting around would be simple. The truth is, access is limited, and there are more obstacles hindering the disabled than one would imagine.

For example, Madison Square Garden is a horrible venue for the disabled. We, the disable are not able to use the main entrance to access this venue. I was shocked when I was told by a security officer at the Garden to go to the back entrance and to take an elevator with VIP’s and other Staff to get onto the floor. We went to see Billy Joel and had seats on the floor. I was led to my seat through a very tight isle, knocking into too many chairs to count, and maybe a person or two. Once at my seat, my scooter was taken away from me, a fire hazard as I was told, “can’t block the isle.” The scooter was no where to be found, and had to be returned to me after everyone else exited the venue at the end of the show. Had I needed to use the facilities, or if I wanted to get something to drink or eat, I would not have been able. It was strange that my scooter was taken from me and parked, who knows where, I lost site of it. Had there been a fire or any emergency for that matter, I would have literally been a sitting duck. This additional anxiety was so harmful, as it made me feel helpless, afraid, and vulnerable. I was beyond thankful that Billy Joel put on an amazing show that I did enjoy regardless.

The Garden is not the only venue or area where accessibility is an issue. Many old theaters are beyond difficult to negotiate so before one purchases tickets, you need to check the theater for accessibility to be sure. In Manhattan, there are very few parking spots made available for handicapped persons, and the ramps to get onto a street are typically located only at the corners of each city block, so if you park in front of a building, like a doctors office that happens to be in the middle of the block, you have to go to a corner to get onto or off of the sidewalk. Many restaurants are not easy access, and there are more step ups into restaurants than you could imagine.

Recently, I went shopping at a brand new Trader Joe’s in New Jersey that located in a newly developed strip mall. Trader Joe’s offers electric carts for handicapped shoppers, but these carts do not leave the store…so how is a handicapped person going to get the cart? There is also a brand new Alta Cosmetics store in that same strip mall. There are two large heavy glass doors at the entrance of Alta. These doors do not have an electric mechanism to open them for the handicapped, so when I entered the store I nearly shattered the glass door, as the closing mechanism was so tight it swung closed rapidly with a lot of force hitting the back of my chair and basically sent me flying! Sort of like getting kicked in the ass.

It is difficult to function in the world with compromised mobility. Recently I celebrated a birthday and had scheduled a little party at a Brush and Board. There were five of us and the owners were told that I was in a wheelchair. Fortunately, the owners very nicely made a station for me to work at that was lower that the high tables everyone else was stationed at. I was with my group and grateful for the accommodations and that the owners of the place thought to have a ramp available for me so I could enter the building, however the ramps were not appropriate for a wheelchair. To enter the building I needed to stand, have my chair brought up onto the tight landing where I was able to pivot and sit in my chair to enter. Not all of us are able to stand , turn or transfer, and I wondered what would have happened if I could not. This was horribly dangerous for me and for those helping me into the building. Even with the best of intentions, many folks miss the mark and do not really understand the needs of the handicapped, let alone the ADA laws designed to protect us and provide access.

Faced with this frustration and anxiety producing circumstance I often wondered, how do I stay positive while the accessibility situation is so often fraught with frustration and danger. I decided early on to use humor whenever I can, and to try to be the best ambassador for the disabled as I can. I try to educate store owners, restaurateurs really anyone who will listen. Generally, I find that people want to be helpful and accommodating, it is just that they have no idea as to what is needed. At the Trader Joe’s mentioned in the beginning of this blog, the manager asked me if there was anything that she or her staff could do to be of assistance. I told her that it would have been fantastic if I could have been brought an electric cart to shop and then I asked her why they do not leave the store. I also asked how would I get into the store to use the cart if I could not walk, because I can’t and that it really made no sense to me to have the carts if they were not accessible. The manager of the store looked puzzled as if she was truly stumped, perplexed in fact. I kind of had a feeling that the carts did not leave the store because of the risks that they can be stolen, still I assert that there has to be a mechanism for shutting them down, a cut off switch, something…as many stores have electric carts that you can drive into the parking lot. The point of having these electric carts is so that we have access and use them, it is not necessarily a courtesy, it is a necessity for us. No one had ever brought this matter to the attention of the manager, and I believe that after our conversation, this issue would be brought forth to the Trader Joe’s powers that be. At the very least, the manager told me to call the store whenever I want to shop, and they will send employees to help me get my wheelchair out of and back into my trunk so I can shop there. The same type of interaction transpired at the Alta store. The manager of that store asked me how my experience was shopping in her store. My reply was that the isles and store itself was set up beautifully, I had room to roam up and down every isle, but that I almost shattered the glass door when I entered and that there should be an electric door opener, as the strip mall was brand new and most certainly did not comply with ADA requirements.

I try to stay positive by being a friendly, but firm advocate for myself and for all of us who have mobility issues. I am clear on what can make things better, and I am quick to articulate issues that do not square with ADA requirements. I try not to get upset, frustrated or down because access can be difficult and I always feel proud of myself when I highlight a problem and believe that good will come out of my interactions with others who need to understand the needs of people with disabilities. I try to use humor whenever I can, to ease the discomfort of pointing out a flaw or obstacle that simply should not be. With every interaction around the issue of accessibility I grow stronger, I help to educate and have others find empathy enough to effect a change, one that will positively impact those of us who need accommodations and accessibility. I stay up when I am down by advocating, educating and connecting with others who then see an obstacle through my eyes, and I am sure that despite any frustrations I may feel, I am proud to be representing no only myself, but all of us who find ourselves in circumstances that could and should be improved, if not by the Law, by empathy and humanity of others.