It’s mid-morning now and I am running late. It is quite a warm day in the middle of June and I am in Washington, DC trying to get to the Cannon Building to meet with U.S. House Members on Capitol Hill. I’ve got a bag, and my 10 pound oxygen tank, along with medication, water and my inhaler. When I get to the Cannon Building, I have a small flight of stairs to make and then security. I made it. Now I am out of breath. Once I am in the hall of the Cannon Building, I stop to take a rest to catch my breath. Then I realize that my oxygen tank is out of air. I feel panicked and disheveled now. I am tired, I have a heavy bag filled with papers, medicine, the cord to my tank, my bottle of water and a host of other items to get me through the day.
Now I am looking around the hall for a plug, and hopefully a seat so that I can rest and let my tank charge for a few minutes before my next meeting. I am looking….looking….looking…and I can’t find a chair or a bench to sit on. I also can’t find a plug either. What am I going to do? I am realizing now that I cannot go any further without at least a little air in my tank.
I found myself now on the brink of tears. I am frustrated, embarrassed, and just disappointed that I can’t find something as simple as a chair to sit on or a plug to charge my tank in the hallway of the U.S House of Representatives. As an American citizen, and a person deeply invested in the well-being of our beautiful country this is the place where I am supposed to be able to visit, right? This is the place where my member of Congress works diligently on my behalf. This is the place where, as a constituent, I have the right to be to voice my thoughts, right? I am thinking of this as I watched all of the seemingly able-bodied people walk fast-paced up and down the hallway that I am now standing in trying to find a seat and a plug before my next meeting.
I walk halfway down the hall (out of breath) and I finally spot a plug in the middle of the wall. So, I plug in my tank, and with reservation, I just sit on the floor with all my stuff. I felt so alone. In the mist of all those people walking the hall of one of the busiest places in the United States, I felt very alone and invisible. Why did this powerful place feel so exclusive?
I live with a disability. I also live with the anxiety, pressure, and oftentimes feelings of exclusion that millions of fellow Americans like me deal with daily. My world moves a lot slower than most others. It takes a lot AND I MEAN a lot of planning for me to be involved in many activities. Sometimes even with all my planning ahead, I can still wake up that very day of an activity and not feel well enough to participate. I know most people do not understand that.
It took me more thank a week to recover from my trip to Capitol Hill that day. Once I got back to Detroit, I had another round of doctor appointments and tests to prepare for. In the last year, I have had a kidney biopsy, a skin biopsy, CT Scans, breathing tests, hall walks, blood tests and more. My legs are scarred from Vasculitis, I have been on very high dosages of steroids, antibiotics, and now chemotherapy. I also wear oxygen everywhere I go. This year I was diagnosed with a very rare autoimmune disease called Eosinophilic Granulomatosis with Polyangiitis or Churg-Strauss disease.
I am 41 years old. I have been dealing with this disease in various forms since I was 25.
You may wonder why I am sharing all of this.
This is why I fight.
I know firsthand what it feels to be excluded from spaces – all kinds of spaces. Grocery store spaces, sports games spaces, mall spaces, meeting spaces, school spaces, and even Capitol Hill spaces. I know how life can change in an instant when all or even some of the pieces don’t come together and how devastating it can be. I know and feel the apathy from the people I encounter. I know how it feels to seemingly do everything right in life and still struggle. It is one of the reasons why I don’t believe in the whole “pull yourself up by your bootstrap” idea. It’s garbage. I have three degrees, I have traveled around the world, I have visited the United Nations, I have spoken out on issues in front of local and national audiences, yet I could not find a seat or bench to catch my breath or a plug to charge my tank on Capitol Hill that day in June. It is why I advocate with all of my being for safe and inclusive spaces for everyone. In my opinion, the “bootstrap” idea assumes that everyone gets a start in life from the same playing field and that is simply not true. There are no even playing fields when we have exclusive spaces.
It is hard to feel excluded, forgotten or left behind. It is why I am determined to be apart of the conversation about advancing human rights for all, especially those within marginalized communities. I am determined to be in those spaces that often, even if unintentional, exclude me.
I am determined to raise the consciousness particularly in able-bodied spaces. Not every disability is visible, and those of us living with a disability do not fit a certain profile. Sometimes it is okay for the world to slow down, open up, and catch up. How else will we be able to include everyone?
I also hope to inspire someone out there that may feel unsure of whether there is a space for them in this fight for human rights and human dignity. Trust me, there is a space for you.
One day, I hope to visit Capitol Hill and see seats or benches in the halls, and a few extra plugs on the walls, you know, for people like me. I know it can be done.
This is why I fight.