Friday, August 3, 2018

Accessibility at a Bare Minimum


Had to take these stairs to get to
the "Washroom"
I went out to eat the other day, and while I was there I had to use the restroom, which was up a few stairs: not a full flight, probably somewhere between 5 & 10 steps. I typically use a cane for support due to inflammatory arthritis from a rare disease called sarcoidosis. Still, I figured I would be able to manage this, even though stairs usually hurt my joints more than regular walking.

I looked for a ramp afterwards, because there had to be a way for someone who cannot do stairs at all to get there, right? Right.  I did not find a ramp; instead, what I saw was this.

If you can't tell what this is, it's an industrial wheelchair lift.  Like a motorized dumbwaiter more than an elevator, one that requires a second person with a key to operate it.  So if someone in a wheelchair has to go to the bathroom, he has to first get staff's attention, and say (like a child in kindergarten), "excuse me, I have to go to the bathroom."  

Chances are that staff person won't have the key, so she'll have to go find the key, or find the person with the key, who will likely finish whatever she's doing before attending to this customer.  Then there's the big production (which draws the attention of half the restaurant) of opening the lift and maneuvering the customer into it (or staring while the customer maneuvers himself into the tiny space).  These units often beep loudly while in motion (drawing the attention of anyone left in the restaurant who isn't already looking).  

Right side: stairs
Left side: disability spectacle
After using the facilities, the customer then has to either wait until someone makes eye contact from the main floor, or yell out to find someone (drawing everyone's attention, once again), and repeat the painful process once again.

This is not acceptable.

It may technically be compliant with ADA regulations, but it is not right.  It robs a person with a disability of the ability to do something as simple as going to the bathroom by himself.  It not only takes away his independence, but robs him of his dignity, making him a spectacle for everyone to watch.  And it takes a long time, which is not always something one can afford when waiting to use the bathroom.  This may be legal, but it is not good enough.

I had to use one of these lifts once, while I was in Washington, DC to meet with my US Senators and House Representatives to discuss legislative issues related to health care.  Those days on Capitol Hill require a LOT of walking; I would not be able to participate if not for my mobility scooter.  If this lift situation had arisen on my way to a meeting, I would surely have brought it up.  Who am I kidding?  If this had happened on my way to a meeting, I would not have made it to the meeting.  

I'd found the sign indicating an accessible exit,
but all I saw at first were stairs.
I had to wait over 15 minutes for someone to come with a key to operate the lift, and it took another 10 minutes for me to get down - and that's after spending a good 10 minutes trying to find an "accessible" exit, 5 minutes by the lift, trying to get anyone's attention/help, and 5 minutes with a kind passerby who tried pressing every button (and several combinations) to try to get the lift to work for me.  

I decided right then that I'd never go through that again.  I would sooner take the 20 minute path back to the elevator, through the basement, onboard the tram, through another basement corridor, to the exit in another (attached) building than go through that again.  If I were in a restaurant with a lift like that, I'd sooner use the bathroom in the coffee shop across the street.  Better yet - I won't be in that restaurant again.

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Monday, March 12, 2018

KISS: Kick In to Stop Sarcoidosis


Everyone knows that it’s not easy living with sarcoidosis.  I take that back.  Hardly anyone knows.  In fact, most people have never even heard of it, and don’t understand when we try to explain (“at least it’s not cancer”).  That just makes it even harder for us to get through life with this disease.  It can make us feel so alone.

Wednesday, November 15, 2017

Liberty Enlightening the World

It’s funny – people around the world dream of coming to New York City someday, and have a list of the major landmarks they want to visit when they get there … but those of us who have grown up in the NYC area tend to take those landmarks for granted. In fact, many of us never even go to those “must see” sites, unless we’re tagging along with friends or family visiting from out of town. 

Tuesday, June 27, 2017

Why I Advocate

Note: This piece comes at the request of the Arthritis Foundation.  I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks.  I am honored to have been asked, and hope the following does the program justice.  For more information, visit arthritis.org/advocate/ambassador-program.
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Nearly 10 years ago, I began feeling a variety of symptoms that didn’t seem to make much sense: I was exhausted and sore without doing anything strenuous, frequently weak, dizzy, and nauseous, I couldn’t sleep.  I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before one believed me and diagnosed it.  Over that time, I developed new symptoms, including skin rashes and painful swollen joints.  It took another 4 years of rotating misdiagnoses before my doctors realized that this inflammatory arthritis was part of a disease called Sarcoidosis.  These illnesses have taken so much away from me: I’m no longer able to work, I have to walk with a cane for short distances and use a scooter for longer ones, and I have to cancel more plans than I can keep.  But the Arthritis Foundation has given back so much.

Sunday, June 25, 2017

Not a Drag


Note: This piece was originally written in response to the following writing challenge, offered by The Mighty: 

We often read comments in our community about people worrying their condition will prevent them from being in a relationship or finding love, even if that’s not truly the case. What would you say to someone else with your or a loved one’s diagnosis who also feels this way?


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Back in college, I dated the wrong boy for far too long.  He seemed to feed off of every insecurity I had, and even gave me some new ones.  While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time.  One thing that has become my greatest fear, my greatest insecurity.