“I feel bad because I even have to ask, you know? I am having a party at my house and I really want you to come, but…I live on the 2nd floor…How can we do this? Can we carry you?”
Earlier this week it was: “There are 3 steps and then another one, a courtyard and another step. And when you get in, the bathroom is not accessible, it’s downstairs. I really want you to be there.”
I hang up the phone and my eyes fill with suppressed tears. It upsets and frustrates me to be excluded from moments I could be a part of. However, these calls also made me happy because people were thinking about access.
There’s been times I’ve been invited (by someone I’ve known for years and is very aware I use a wheelchair) somewhere I thought was going to be accessible—only to get there and find out the master plan was to get a bunch of guys carry me up 2 flights of stairs in a power chair…or leave my 300 lbs. chair downstairs, be carried upstairs, and sit in a rented folding chair…really? This was your plan?!? Don’t get me wrong, I am a very flexible, adaptable person and have been piggybacked in rough terrains and carried up stairs– who can say no to the arms of hunky, muscled men!?
My problem is when that decision is made for me. My power and autonomy is taken when others assume what will work for me.
I’ll be honest, I’ve sat at home alone on Saturday nights watching shows on Netflix because people from class were having a party at their apartment and I couldn’t get in, or missed out on the baking party all the girls from work had. I never even got invited although plans were openly happening around me. And I don’t know if in their head it was just ok not to invite me because “I” should understand I couldn’t get up the stairs…or maybe I’m just not cool enough (Nah…I’m a pretty cool person).
I recently read a post on Facebook from a friend who’s a wheelchair-user. She was upset that her close friend threw a bachelorette party and didn’t invite her. When confronted, her response was: “There are steps, I didn’t think you could come…” Regardless of the decision to go or not to the party, it was assumed she couldn’t partake in this special moment with friends. Sometimes it’s the ones that we love that assume. Maybe it’s because they know us and think they know what’s best for us. It made me think of 2 particular moments.
One of my best friends was getting married. I was no doubt going to be a bridesmaid…but I was never asked. Instead, our group of girlfriends, plus a not-so-close friend, stood at the front of the church that day. It was explained to me that I wasn’t a part of the wedding party because the bride thought it would be too much for me…”all day, you know…and getting in and out of limos, and the pictures at the park…” Ohhh, yeah, I understand! All of those things are things I can’t handle! I was happy for her but very hurt. She had always been with me at the hospital after my accident- we cried together, laughed together. I wanted to be a part of her wedding.
The second situation happened not long ago when I traveled to Chicago to see my sister and her new baby. I was there for many days but only got to see her and my nephew few times because her home has several steps to get in. On this same trip, my other sister asked me to babysit her children. When I asked if I could pick up the kids and bring them to me, she hesitated. In the end her plans fell through but it left me wondering what I would do. 1) A ramp needs to be set up to get in/out of the house and then removed so the door will close. In case of an emergency I would not be able to leave the home and get her children to safety; 2) the kids needed to be in bed by 8pm and their rooms are on the 2nd floor. I would not be able to ensure they were in bed and not playing with toys, and 3) the bathroom is not accessible, so I would have to not drink anything to last all those hours or figure out a way to pee in the kitchen. I was really excited that she asked me to babysit and immediately sad that there were so many barriers for me to do it.
I share these stories not to call out my loved ones because I understand that when planning a party or buying a home…it’s not about me, it stings, but I get it. I can certainly be flexible and adapt because I do it every day in this non-disabled world that insists on creating physical barriers to my special family moments, employment and choices in housing. However, understand that I probably can only stay for a few hours because then I’ll need to find an accessible bathroom or maybe I don’t want to be carried because my body hurts and please don’t insist because it starts to make me feel guilty. It’s not fair to be made to feel guilty and self-conscious when I did nothing wrong
Looping back to the beginning…those two phone calls. I don’t know if I will attend those events because it just wouldn’t be safe or I want to be able to use the bathroom. Either way, I was surprised to receive the calls and glad that people are thinking about access.
I may not ever be “able-bodied” again but I’m hopeful for the day the world will be barrier-free and I won’t be “disabled” anymore.