“You look fine to me” This is the refrain I hear most often. Or the worst of the worst “You’re just wanting attention you look fine” Most recently I was sitting outside at a business where I’d parked in the handicap space. A woman unknown to me came up and I could tell it was going to be a confrontation moment. These happen more often than you’d think to those of us in the twilight of disability or with a disability not outwardly ‘obvious’ to the public.
“Who do you think you are parking in that space!”
Startled by the anger I took a moment to look her up and down. I noted her expression and immediately knew she was only looking to bully me. Perhaps she’d wanted to park closer and couldn’t. Perhaps she had a relative in a wheelchair who was paralyzed and felt this was the only person who ‘deserved’ to park in the handicapped space. I reminded myself I am under NO obligation to talk about my diagnosis or why I was given the form by my DOCTOR to park legally in the space I’d just parked in.
“Excuse me?” This is pretty much my response and I sat back to see where this was headed.
“That space isn’t for someone like you! It’s obvious you’re f***ing fine!” She said this quite loudly and nearby people turned their shoulders in to shut out her voice while others turned to stare. I simply looked at her and raised both my pants legs revealing the leg braces on my lower legs and ankles. Then I raised my shirt with my hand which in also in a rigid brace (it also keeps my middle finger in the F U position ironically) revealing the back brace I also wear under my clothing.
“I don’t know you, you are not family nor are you a friend so you need to walk away.” I sat back and took a long drink of my coffee not taking my eyes off her.
“F**K YOU!” She said and snorted in disgust while turning away.
The manager of the location I was at came outside and apologized to me for this person’s behavior and offered me a gift card for their establishment. I looked her in the eye and smiled.
“YOU didn’t do anything offensive, this wasn’t about you, it seemed to her personal issue. She probably feels I am somehow taking advantage of the ‘system’ or what not or she simply needed to be ugly towards someone she saw as less than herself.” This is called ableist behavior in line with sexist, racist, sizeist behavior.
“That wasn’t right though. Please take this and come back to use it. We’re a no tolerance zone business when it comes to this type of bullying.” I took the card as I know she were only trying to make this right somehow and were embarrassed by what had happened.
This was not the first time I’d experienced this as I travail in this zone of twilight time before full out relapse strikes. I’ve hovered at the edges of the twilight of relapse for a few years now. This past year it became too difficult to pretend anymore I was ‘okay’. I could no longer ignore the daily pain or twinges in my hand which no amount of acetaminophen could make go away. I’d been given the gift of over a decade of remissatory status. Over a decade and I’d known the whole while I could wake up one morning and my gift of time to do all I wanted would be gone.
I’d not been expecting this slow fade into twilight. The twinges turning into full out pain nor the times I had to lift my leg to get in and out of the car. I’d wanted more time and there are those moments I look back and feel I squandered the gift I’d been given. There had been a sense of needing to give back and so I’d pushed myself hard to get into arenas of work I knew would be giving and not taking. Selfless giving until I was drained dry and had nothing left.
The dusk is approaching and it is as if I feel or hear it coming to take me. I no longer see it as an enemy as I used to. Instead I see the challenges it brings to continue on with what I want to do. Not what anyone else wants me to do but what -I- want to do with my time.
The past six months have been perhaps the most difficult as I had to face this was not momentary it was something I could no longer ignore. There have been days all I could do was lie in bed and stare out the window because the pain was too bad to leave my room except to go to the bathroom. I had a lot of choices to make, finances not helping in this area as I’m on a very limited budget. The hardest one to make is one I now do not regret and only wish I’d had the courage to make much sooner.
Six months of multitudes of specialists appointments. Rigid braces to adapt to one at a time and ones that I’ve had to try different styles because the first were not working for me. There have been many weeks of more than eight appointments per week on top of the three exhausting physical therapy appoints. I am exhausted but I’m not giving up. I can’t and won’t even in the face of bullies who take a sick pleasure of trying to start a fight with a stranger who they believe is ‘lesser’ than them.
I am NOT less because of my disability. I am a fighter and I will not quit and some quick advice to those who think they ‘need to say something’ in public to someone parking in the handicapped parking space. We do not enjoy being ‘able’ to park there. I used to park far out in the lot just to walk as much as I could and it slays me every time my body tells me to park in the designated spot. Sometimes I may not park there on a fairly ‘good day’ but these days are fewer now and I find I have to park in the closest spot I can. By the time I get back to my car I’m exhausted and still have to drive home.
Why not just have someone drive me all the time? Because I don’t have that option and frankly…
Most days I want time alone in my car to keep a semblance of independence as long as I can.
So the advice I want to give to those who feel they ‘have’ to say something?
Shut the hell up because your ‘need to say something’ could be the reason that person you’ve confronted stops trying to get out anymore. You are making an already difficult situation harder than it already is.
So shut it and move along.