I’m in a period of life of doing a lot of observing, thinking, reflecting, and with that being the case, I’ve come to a lot of difficult realities.
This is not to detract from the black lives matter movement at all that is gaining steam in the western world and definitely stand behind that as a black friend put it something like “our lives are on fire. We have to call 9-1-1”. I agree. I am not interested in all lives matter. I’m not even so interested in disability access until I get it in my face.
In my observing and reflecting lately, I’ve looked a lot at religion, schools of philosophy, and have probably been dabbling in too many different things to come to any conclusions. I find whether it’s the yoga sutras, the Muslim faith, stoicism, Christianity…, it all comes down to “love thy neighbor as thy self”, which is just the Christian way of saying it.
I love loving people. I appreciate and respect friends in my life who have wholeheartedly thrown themselves into one religion, philosophical school, not because of what they choose, but I admire their passion. I love their love. I get jealous of how they can throw themselves into it with both feet, arms, torso, heart, when my life circumstances have put me into a place where I can only dabble.
Occasionally I was going to a Christian church prior to the pandemic. Due to my trauma, Christianity was a really hard pill to swallow. I’ve come to realize it’s not Christianity that makes things difficult, it’s hypocrisy. It’s hiding behind anything that is based in love to give you an excuse to be an unkind, unthinking, or lead you to feel virtuous when your actions are opposite. I’ve seen it in Christianity. I’ve seen it in the yoga community. I’ve seen it among Buddhists. I have seen it in humanity.
Last night this church had a social distancing service in the park. Even if I can’t completely wrap my mind around any single thing spiritually as that’s just where I’m at, I appreciate the positive and loving message that this particular group of people offer. Who couldn’t use some uplifting in uncertain times or general life?
We broke into small groups. One of the things we were asked to do was have people volunteer to pray for their partner organizations. One of the partner organizations was sitting there, in my face staring at me in my disability and it hurt—a lot.
I’ll tell you why. This organization did a couple wonderful things for me that I was hugely appreciative of and hoped it to be slice of my community. As my physical disabilities advanced and access wasn’t as simple as running up a flight of stairs, the door was closed to me. I had a conversation with one of the higher ups several months ago saying how much I loved going to events, but I can’t go up a flight of stairs. The first response I got was, “those stairs are steep and can be hard for me”. No. Don’t you see me sitting across from you in my wheelchair. A flight of stairs aren’t just hard, they are impossible.
I tried to use my kindest as well as assertive self to request disability inclusion with this particular group. I already knew they couldn’t help me in regards to anything with my chronic illnesses. I was fine. I asked for community. I was offered community until I couldn’t access community as many events are upstairs or I was told at the time that they were roller skating and skiing, so that wasn’t going to work. I kindly said what I could do, which were activities that were done in the past.
The monthly calendar wasn’t sent to me anymore. I made a request about something that would be coming up that I could do. I received a simple text basically saying that they “hope you feel better”. In times of COVID, I assumed they shut down, but sitting across from me was a woman I didn’t know from this organization bestowing the virtues of still being up and functioning without anyone getting sick and still helping women.
I smiled. What does one do? No one stood up for me in regards to how my disability affected me with this organization. I wanted to pick up my forearm crutches, dig a hole in the ground, lay in it and put the dirt on top of me. My very visible disability is an invisible problem.
I admit, I’m not the stereotypical disabled person that able bodied people think of. There’s a lot of stigma that disabled people live miserable lives sitting in our houses rotting away. I luckily have met paralympions, my teammates on my wheelchair basketball team are among some of the most active people I know. People with physical disabilities do incredible things not because they are disabled, but because able bodied people do incredible things too.
One thing that is universal to physically disabled people I know at least is that if faced with a flight of stairs, it’s going to be a major challenge, if not impossible.
So as they prayed for this wonderful organization that has been able to stay open and operational continuing to help women, I realized I’m not THAT woman. I’m physically disabled that gives me a lesser status to some. It hurts. I encounter disability discrimination regularly. In a world of so many hurts, it’s one I don’t grieve often as I tend to celebrate what I can do versus what I can’t. I’m grieving at 2:30 in the morning as I had a tangible experience again of what I can’t do. Where I don’t belong.
So I listened to how grateful everyone was that they could stay open and the wonderful work they do. I agree, but not if a flight of stairs is your Mt Everest.
So as soon as I possibly could, I separated myself from those people as I have certainly learned you can’t find water in an empty well. It’s futile, pointless, and frustrating. I don’t go to empty wells for sustenance anymore. I don’t even try.
Sometimes I don’t know how to share my story. Yesterday wasn’t the time. That organization can help the women who can climb a flight of stairs. I can turn and gimp, wheel, crawl away from the empty well with anger and sadness to a well that is full when I’m really thirsty. So that’s what I did.
Hypocrisy, discrimination, exclusion shows up in a lot of places. I can only hope that there is genuine and positive change in the black lives matter movement. I’m doing what I can. As long as that needs to be huge, and these are discussions I personally back and want to go well whatever the mechanism has to be seen to be heard with a hope that someday there will be a trickle down effect that people who care about me might think about how my disability affects daily living. Daily grief. How a flight of stairs is a representation of rejection and sadness.
I’m not actually in a heavy mood, but it’s sometimes hard to sit in a group of people affirming an organization when I had to adapt just to go to that service alone as my legs were extremely exhausted yesterday and using my forearm crutches wasn’t ideal when I needed my wheelchair, but it’s not about disability right now. Just something to think about that I never had to until it became me. That’s privilege right there. You don’t think about it until it is you.