Inspiration Porn

You may or may not have heard the term “Inspiration Porn.” It is defined as any meme, video or feel-good article that sensationalizes people with disabilities. It was coined by the late social justice activist Stella Young in 2012, when she wrote an article titled “We’re Not Here for Your Inspiration.”  She writes: “Let me be clear about the intent of this inspiration porn; It’s there so that non-disabled people can put their worries into perspective…It’s there so that non-disabled people can look at us and think ‘well, it could be worse… I could be that person.’” It objectifies disabled people for the sake of non-disabled people.

A common caption to these images is a Scott Hamilton quote, “The only disability in life is a bad attitude.” The images are meant to motivate; If these people can live with just one leg,” for example, “I can do so much more without a disability.” It comforts us. But it also incorrectly assumes that disability can actually be overcome with a smile and a little bit of determination.

Once, when I was still on forearm crutches, I visited a friend that lived in an apartment situated at the top of a steep flight of stairs. As we were leaving, my husband helped me down the stairs and went to get the car. I waited on the sidewalk and saw a woman rushing down her own set of stairs. She seemed to be coming straight at me. And she was. She said something along the lines of, “I just watched you climb down those stairs and I think I have seen you here before.’ I’m thinking, okay Adam hurry up. Then she said, “I think it’s great that you get out. I just wanted to tell you that.” I thanked her and Adam pulled up and that was the end of it. But that experience stuck with me. I know she had good intentions but I wonder if she knew she actually made me feel a little small. I impressed her because I lived life with a disability. I visited a friend. If you took my crutches out of the situation, would she have approached me? No.

The reality is that disability is a social experience. The disabled population is not just here to inspire you. We aren’t people doing extraordinary things. We are living life.

Watch Stella Young’s Ted Talk here.

My New Normal

Being diagnosed with MS divided my life into two very distinct parts; my life before multiple sclerosis and my life after. I have heard the term “new normal” in regards to many things, including MS. It fits.

I was initially diagnosed with Remitting Relapsing MS in 2011 however, in retrospect; I had experienced symptoms up to ten years prior. At the end of 2013, my neurologist said that I had progressed to the Secondary Progressive MS stage of the disease. This makes sense if you take into account the misdiagnosed years. SPMS occurs when you no longer suffer relapses and remissions, but your symptoms instead progress steadily over time. Instead of hills and valleys, think a gradual downward slope.

I had been using a cane off and on for the past decade but my gradual slope started with transitioning to forearm crutches. I met with a physical therapist and she showed me a few different types. I decided to go with the Walk Easy lightweight forearm crutches. I highly recommend these. They give you so much more stability than a cane but aren’t as heavy as the forearm crutches you are probably familiar with where the cuff goes ¾ around the upper arm. Walk Easy crutches don’t lock in place which gives you more freedom. I used these for over 2 years. In the summer of 2012, for a family vacation, I decided to rent a Luggie Scooter because I was finding it harder to get around without getting exhausted. The Luggie is a fold-up scooter that fits in the trunk of your car. It weighs only 60 lbs. I fell in love with it while using it at Hearst Castle. I could get around and enjoy things again without worrying about the next place to rest. When we got home, we ordered one of my own. I fashioned a crutch bag to strap on to the back of the scooter and I was set. Unfortunately, after a fall in early 2014, I became dependent on the scooter and was unable to walk anymore without fear of falling. While the scooter was great for trips and smaller outings, it was uncomfortable as an all-day option. Since I work from home, I needed something more comfortable that fit me better. I met with an occupational therapist and representative from the wheelchair company and got the ball rolling on a power wheelchair.

I was never hesitant to use mobility aides –they were there to help me get around better, faster, and more efficiently. I was a little embarrassed when people saw me with my forearm crutches for the first time. I looked disabled. Don’t be embarrassed! Mobility aides are a thoughtful, smart, and safe decision. I was steadier on my feet with the crutches. When my friends saw me in my scooter for the first time, they all wanted a chance to ride it. It was fun. Now that I am in a heavy-duty power wheelchair, I have faced the fact that what people first notice about me is that I am disabled. Being in a wheelchair does not diminish the person sitting in it. I’m still me. This is my new normal.