Showing posts with label wheelchair. Show all posts
Showing posts with label wheelchair. Show all posts

Wednesday, December 7, 2016

Life in a Wheelchair

I never really questioned my transition from forearm crutches to a scooter and then to a wheelchair. My legs were failing me and dragging myself around on crutches was exhausting. We rented a scooter and “aha!” I could get around again. When I started relying on the scooter more, I needed more comfort and support and I got a power wheelchair. Easy decision. I was conserving energy. But I didn’t realize this would change my life so much.

First, tons more people remember me than I remember them. It's like a low level of fame. It also becomes your defining characteristic. I’m the redhead in the wheelchair.
  
Second, everyone stares. Once, when I was shopping in my scooter, I heard a woman say, “Oh! That looks fun!” Yeah, lady, it’s just like a go cart zooming around. By the way, walking looks fun too.

If they aren’t staring, they’re purposefully trying to look away, or they have their gaze set on the few feet above my head where I’m sitting, and that’s even worse. Like hello, I’m kind of hard to miss. Or, I’m invisible. I have to shout at people who walk down the street, heads bowed, looking at their phones. I usually just give a “Hey!” and people jump out of my way like I’m on fire. I swear I will run smack dab into someone someday. It’ll be awkward. Or, even worse, I will be hit by a car that was in too much of a hurry to notice me in the crosswalk. Once I made eye-contact with a driver and I could tell he was calculating how fast he needed to go to cut me off – which he did. What the hell, man?! Note to drivers everywhere: look before turning right on red or hanging a left on to a one-way street and respect right-of-way. I might be there waving, always on defense, aware. 

And another thing: Have you ever noticed the cracks, bumps and gaps in the typical sidewalk?  Or that not all crosswalks have a clean cutout? Crossing the street is an adventure in itself.

I don’t want you to feel sorry for me as the poor disabled girl. I don’t want you to look at me as this inspiring hero. I want you to realize I’m just a person, now at about 4 and a half feet tall instead of 5 and a half.

Monday, June 22, 2015

Limitations

One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. The effects of multiple sclerosis vary based on which part of the brain or spine is damaged, or more specifically where damage to the nerve-protecting myelin has occurred. As a result, symptoms can be radically different from patient to patient. There isn't any typical MS; everyone's MS is unique to them. It's a very difficult disease to understand. But as you live with it, you need to understand your MS.

Since my MS mainly affects my mobility, I have to be aware of accessibility. I have to be more prepared than before. This takes the spontaneity out of going out. I need to know whether the places that I go are handicapped accessible or not. There’s nothing worse than getting somewhere and finding that you can’t enter because of a stair or stoop. I also need to know whether the restrooms are handicapped accessible or not. This small detail to some is of utmost importance to me.

I am lucky to live in a condo that has a ramp and elevator with a courtyard in a neighborhood that is vibrant and active. I also live near BART (Bay Area Rapid Transit) that can get me around town pretty easily (as long as the elevators are working!) I am also fortunate to have friends that understand my limitations and make a point of coming to me and not letting me feel too isolated. As does my husband and family.

Overall though, I think that there's a limited understanding of what it's like to exist in a less-abled, wheelchair-bound, body. This needs to change. Thankfully, Jason DaSilva of AXS (read: access) Map is bringing us a kind of Yelp for people with disabilities. Creating this viewpoint for those without disabilities is crucial to making a change in society. The disability rights movement needs to gain momentum.


I am thankful that my MS has left my mind unimpaired and I can get around in a wheelchair. But it needs to be easier. There is a fight to be had.