Invisible-At-First-Glance Disabilities

images-3

The last post got a lot of attention. Many seemed ready to go find minivan lady and make her pay for her comment. Others commiserated on having to fight for recognition for their own invisible (or invisible-at-first-glance) disabilities.  

I was disappointment that Peter was forced to spend time explaining his and Jack’s disabilities to a stranger. The last thing a person with a disability should be forced to do is educate, but unfortunately it often comes with the territory.

Especially when their disabilities are invisible-at-first-glance.

When out and about with Jack I often watch people as they try to figure things out. As if I can see the thought bubble on top of their head, “Why is that mom holding her son’s hand/feeing him/taking him into the bathroom?” “Why is he rocking back and forth?” “Is he licking the wall?”

Sometimes people will stop me and whisper, “My grandson/nephew/daughter/neighbor is autistic”. If I have the energy, I try to explain that although Jack shares some similar behaviors, he in fact has Adrenoleuokodystrophy. “The Lorenzo’s Oil disease – did you see that movie back in the 80s?” If I am tired, I just smile and nod my head knowingly. People seem to love having the connection and who really cares if people think my son is autistic vs effected by ALD.

There have been times that Jack’s invisible-at-first-glance disabilities have lead to awkward moments — like the time we got reprimanded by a woman at a Broadway theater. Jack had been annoying her by grabbing the seat in front of him – her seat. She had asked him several times to please stop. I tried to hold his hands, but Jack is strong and managed to break free for one last grab. She turned to me and loudly whispered, “PLEASE control your son!”

I felt terrible, understanding that it was her night out too and nobody needs to have a stranger touching their chair. At the intermission, I approached her, apologized and explained that my son had challenges and sometimes wasn’t able to control his behavior.

Her eyes widened and then filled with tears as she apologized again and again. That made me cry. There we were, two women in tears, waiting for the intermission to be over so that we could get back to our seats and pretend the whole thing never happened. Jack must have sensed the tense mood in the air and never touched her seat during the second act.

Jack has his share of disabilities and medical complaints, but at first glance, it can be hard to know that he needs a handicap placard. And, Peter has worked tirelessly to overcome and work around his challenges. I guess I can’t fault minivan lady for looking over and seeing two dashing young men get out of their car and think that maybe they hadn’t earned that spot.

All is forgiven, but I do hope that she learned that disabilities aren’t always clearly visible and perhaps she should save her scolding for people who don’t stop for pedestrians or text while driving or turn left into the parking spaces on Maplewood Avenue.

Love, Jess

Shame on you Facebook lady

images-7

 

Yesterday morning, as I was wandering through Facebook, I stopped at a comment which started with, “To the person who stopped to yell at me in the parking lot . . .”. I had a few minutes to kill, and those posts are often fun to read, but as I scrolled down my blood started to boil. The person was complaining that she had been scolded for parking in a handicap space without the proper placard (or a proper DISABLED person). She went on to say how busy her life was and that she has used that spot every day for two years when she drops off her children at day-care.

Without much thought, I started my response. My hands were shaking and I had tears in my eyes. She had struck a nerve. I’m not sure exactly what I wrote, but I used the words, “shame on you” more than once. I hit send hoping that my words would make her think and realize the sin she had committed. Instead, I watched as she continued to make excuses and ultimately take down the post.

I’m going to give it another shot now that I’ve had a little time to regroup. I know it’s unlikely that she reads this blog, but venting always helps me feel better.

To the woman who posted on Facebook about being yelled at in the parking lot –

I wish you could understand that those of us who have the “luxury” of convenient parking wish that we did not qualify. It took our family years to come to terms with the fact that it was not safe to maneuver our son through parking lots. That our pride was putting our son in danger. We now appreciate knowing that we can find a parking spot close to our destination so that we can easily come and go – quick exits are often as necessary as easy entrances when you are caring for a person with challenges.

And, our family is among the “lucky” placard holders. We appreciate the safety of a close spot – the ability to limit the amount of steps (or hops) it takes Jack to reach wherever we are headed, but many of our friends are literally not able to park without the added space that a handicap spot provides. They are unloading large equipment – walkers, wheelchairs. There is no other option for them.

Handicap placard holders are not just driving around looking for parking. We are living full lives. We have deadlines and commitments. We are busy too. Accessible parking doesn’t just provide connivence, it provides people with disabilities (and their familes) some independence.

I remember my hands being full when my kids were little and I was late. I remember my back straining as I unbuckled the kids, grabbed the diaper bag and extra snacks while yelling, “Don’t move! Let me get your sister!”. I remember holding tiny hands and praying the rain would hold out just one more minute so that we could make it through the parking lot.

I remember those days, and all I can think now is just how easy it was.

Shame on you Facebook lady.

Love, Jess