Well, the day has come again. People in several disability communities I’m part of on a social media site have started discussing what does disabled mean. It’s not the first time. I wrote about this here: The Disability Card and here: Orphan Zebra.
Today is different. Maybe it’s because I’ve had several heart to hearts with my care team recently. Those complicated discussions where the doctors try to convince me that when I push myself, I only make myself sicker while I argue that pushing myself is what is expected as I’m not disabled. Then the doc runs through all the things they are providing support for me. I guess the day is finally here.
People look at me and don’t see disabled. I work very hard to be non-disabled, so on the days people see me “normal” they have no idea what it took to get there. Of course, I only leave the house 4-5 days a week because the rest of the time I’m trying to get “better” enough to look normal. It’s a daily decision on whether I’ll make it out of the house.
I think the hardest part is I’m still of working age and have the education to be employed. I should be working, or so I feel. I’m just not sure there are any employers who understand why I have so many doctor appointments. Or why I’m dragging at work. Or how can I be sick….again. I’ve worked for employers who can’t see past disabilities whether they be temporary like the flu or permanent like mine. There is discrimination, both subtle and outright. The last few jobs I interviewed for, I was asked about my disability in a very roundabout fashion. Oh, they are careful not to ask outright and I do my best to answer truthfully without shooting myself in the foot. But, I can’t help but wonder if I’m not getting the job after the interviews because of disability. What if I’m equally qualified as a non-disabled person? Who would you choose?
So today at an appointment, my insulin pump fell out of my pocket. I now have quieter infusion pumps in the backpack, but you can still see the IV line running under my shirt. My service dog alerted during the appointment. I lost my train of thought because I was dealing with the alert. Fortunately, this was not an interview. It’s really hard to overlook these things.
So, to the guy who told me I was using a handicapped spot I didn’t need; the person who exclaims “you don’t look disabled!” and the surprised looks I get when my service dog comes out from under the table….leave me alone. You have just walked in on chapter 47 of my life. You don’t know how I got here or what my future holds.
To those online personalities who try to define disability, just stop. Disability is individual. In some cases, one aspect of a life is affected. In others, it is multiple aspects. It’s not a contest. It’s not a game. It’s life and all I want is to live it the best way I can.