I've been putting off writing this post for quite a while - every time I try to start it, I get terribly upset and it's so hard to put this experience into words - but I have to try.
It is very easy to feel guilt when you've become disabled - you have to rely on other people for things and you often feel that you're asking for special treatment just so you can get through the day. Most people are kind when they know that you have a physical barrier - some are not. But when you have an invisible disability, very few people can even tell you're having a physical problem. Worse, they often openly DOUBT you have a physical problem...
I've read stories of people like me being accosted and shamed for having a Handicap Parking Permit - it's a legit permit, but people assume it's stolen. They've been accosted and shamed because they use scooters to go shopping and they "look normal". I was turned down for the Access-A-Ride program because the woman in charge would only ask me specific questions that just didn't apply to my disability, ignored the info I gave her on their own forms, ignored that while I was able to do what she asked me to do physically that I was in tears while I did it, and just decided that I didn't need help. When I refused to walk up and down a hallway "until you can't anymore", she said "there are other people here besides you and they need help".
Then you get people who just flat-out shame you for being disabled and trying to live your life. The following exchange happened on Facebook when I commented on an article about using the service Uber:
It is very easy to feel guilt when you've become disabled - you have to rely on other people for things and you often feel that you're asking for special treatment just so you can get through the day. Most people are kind when they know that you have a physical barrier - some are not. But when you have an invisible disability, very few people can even tell you're having a physical problem. Worse, they often openly DOUBT you have a physical problem...
I've read stories of people like me being accosted and shamed for having a Handicap Parking Permit - it's a legit permit, but people assume it's stolen. They've been accosted and shamed because they use scooters to go shopping and they "look normal". I was turned down for the Access-A-Ride program because the woman in charge would only ask me specific questions that just didn't apply to my disability, ignored the info I gave her on their own forms, ignored that while I was able to do what she asked me to do physically that I was in tears while I did it, and just decided that I didn't need help. When I refused to walk up and down a hallway "until you can't anymore", she said "there are other people here besides you and they need help".
Then you get people who just flat-out shame you for being disabled and trying to live your life. The following exchange happened on Facebook when I commented on an article about using the service Uber:
The people commenting were totally misunderstanding what the article was about, which was how price gouging occurs on UBER during storms and how quickly charges mount up - they thought she was an idiot who paid money to ride for a distance that "could have been walked". So I commented. And here's what happened:
WHAM! Shamed. Yeah, he was a troll. Yeah, you should ignore trolls. But I just wasn't in the mood to take it.
Someone was nice enough to stick up for me:
Thing is, even Edward had it wrong about my social life - I don't really have one. I try, but I pay the price in pain after I try, so I limit that drastically. Mostly I'm out and about to go to different kinds of therapy. But even if I WAS going out to have a social life - am I not allowed? What am I allowed to do without being called a "user"?
How do I handle the glowers do I get when I squeeze into a bus seat between 2 people who obviously don't want me there?
I've sent Mayor de Blasio my idea for having a card on a lanyard for invisibly disabled people to show to get a seat. In London, they're asking for buttons, but those seem awful and are too easy to reproduce for people who just want to fake being disabled. I suggested he do it through the Handicap Parking Placard program - we could register for it the same way with a doctor's note, it would be numbered, it would be small but have the logo, we could hide it until we need it so we don't feel branded, and the flip side could say something like this:
I have an invisibility disability. While I look fine, I am probably suffering from chronic pain or severe fatigue or dizziness. Please be kind and allow me to sit here.”
I sent the letter 2 days ago - let's see if he responds. I think it's a good idea.
Anything that can cut down on the shaming is a good idea.
How do I handle the glowers do I get when I squeeze into a bus seat between 2 people who obviously don't want me there?
I've sent Mayor de Blasio my idea for having a card on a lanyard for invisibly disabled people to show to get a seat. In London, they're asking for buttons, but those seem awful and are too easy to reproduce for people who just want to fake being disabled. I suggested he do it through the Handicap Parking Placard program - we could register for it the same way with a doctor's note, it would be numbered, it would be small but have the logo, we could hide it until we need it so we don't feel branded, and the flip side could say something like this:
I have an invisibility disability. While I look fine, I am probably suffering from chronic pain or severe fatigue or dizziness. Please be kind and allow me to sit here.”
I sent the letter 2 days ago - let's see if he responds. I think it's a good idea.
Anything that can cut down on the shaming is a good idea.
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