We Need To Do Better

I recently read a little story on Facebook about a man named Tim who was at Boston Logan Airport with his sister, whom he had been visiting. Apparently, Tim was deaf and blind. When he was guided onto the plane by his sister, they discovered he was assigned to the middle seat and the kind gentleman in the aisle seat gladly switched with Tim. The story went on to describe all the other wonderful things that happened for Tim during his flight like his seat mate guiding him to the restroom and opening his coffee cream container, and the flight attendants rallying to find a way to communicate with him, including allowing him to touch their faces and hands and arms and even considering sending a page to the entire plane to see if anyone knew sign language. But then a teenage girl appeared who was dyslexic and learned ASL because it was the easiest foreign language to learn, and she parked next to Tim and talked to him the whole flight and met all his needs. “It was fascinating to watch as she signed one letter at a time into his hand. He was able to 'read' her signing and they carried on an animated conversation. When he asked her if she was pretty, she blushed and laughed as the seat mate, who had learned a few signs, communicated an enthusiastic yes to Tim. I don't know when I've ever seen so many people rally to take care of another human being” (Humanity Project Facebook page 2020. This is not the original posting of this story. It has been shared many times so it is very difficult to determine the actual origin).

It’s good to hear a nice story like this but believe me this is not the norm. My brother, Dave, who has quadriplegic cerebral palsy, uses a wheelchair, is nonverbal but uses a communication device, and is of above average intelligence (think Steven Hawking), was flying back to his home (and wife) in Austin, Texas from Cleveland Hopkins airport on American Airlines. A friend and I got him on the plane and settled in his seat. He would not need anything during the flight and had a friend meeting him at the end of the flight to help him disembark. Well one flight attendant pitched a holy fit when she observed my brother and his need for help to board the plane. She started ranting about how he could not fly unattended. It was not her responsibility to aid him should he need anything. In the event of a forced landing, it was not her responsibility to help him off the plane. I told her then don’t. Leave him. I said I was sure some other kinder person would come along to help him—or not, but it was certainly not her responsibility. She stopped the boarding process and conferred with the crew saying they needed to remove my brother from the flight. I pushed back of course. In the end the captain said he could fly and assigned the flight attendant to a different section of the plane. No one rallied around Dave, or even paid him a bit of attention during his flight. 

I’m glad to hear about Tim’s nice story. But for every nice one there’s a not-so-nice one, like Dave’s. It is probably more like for every one nice there are ten not-so-nice! And even the good ones are a little cringy and most are “inspiration porn” (a reference from Stella Young—we will talk about her in a bit).  For example, in Tim’s story, if they could not communicate with him, how did they know he wanted coffee with cream and how did they know he wanted help with his cream container? They let him touch their faces, arms and hands? He got away with asking if a teenager (she was 15 years old) if she was pretty? If Tim had not had any disabilities none of that would have been appropriate.  I even question if it is appropriate for Tim with disabilities. And then the idea of announcing to the entire plane that they have a deaf-blind passenger on board and is there anyone here who knows ASL? Maybe Tim wants to fly under the radar on this flight. Maybe he wants to nap and not talk to anyone. No one took Tim into consideration when thinking about Tim’s needs. 

 

This story highlights how wonderful it is that the non-disabled people around Tim, rallied to help him and went out of their way and above and beyond to make him feel welcomed. But what really happened was a bunch of people singling out Tim and shining a spotlight on him as a display of their altruism.  Most people with disabilities do not want to be put on a pedestal or to be used as a pawn in feel good stories. They just want to be. They want to be a part of the crowd not the focus of the crowd.

Stella Young, as mentioned earlier, put it so well. Our society has been conditioned to think about people with disabilities as exceptional but not because the do great things but because they can engage in some typical, run of the mill daily things while having a disability. So when we see someone with a disability we tend to think about how hard life must be for them and when we see them “overcome” their challenges we are inspired. Think about the images we have all seen of the runner with a carbon fiber prosthetic leg or the artist with no arms painting with a brush in their mouth or with their feet, with a slogan attached like “the only true disability is a bad attitude” or “try before you quit”. These are designed to INSPIRE! If they can do it, so can I! And they also make you think no matter what barriers I have, at least I am not that person. This is inspiration porn. Stella said, in a TED Talk about why she uses the term inspiration PORN, is “because they objectify one group of people for the benefit of another group of people. So, in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person’. I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. And it is objectifying. Those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.”

The story about Tim, to me, is inspiration porn. Yes, it was nice that folks helped Tim. But if he had not had a disability the story would have been very different, from the help he would have received to the bystanders’ reactions. But because Tim had a disability, he was seen as “less than” as needy. We were inspired by his courage to travel alone and his tenacity to communicate but no one gets all excited when I travel alone or communicate with people. Also, if someone opens my coffee cream or points me in the direction of the bathroom on a plane, no one writes a little story about how great it was that so many people rallied to support me. People with disabilities do not want to be treated special. They do not want to be your inspiration.

On the flip side, people with disabilities do not want to be considered your burden or responsibility either. They just want to be. They want to be included and accepted and to belong. They do not want special treatment, just equitable treatment and access. As much as people rallied around Tim, they fled from Dave. The flight attendants did not convene to discuss how they could help Dave feel comfortable on his flight. No one jumped to his defense except me and his friend, and thankfully the pilot of the plane! But no one really had to. They just had to let him be. They just had to accept that Dave is just another passenger on another plane. He is not special or exceptional. He is just a guy that uses a wheelchair and a communication device. We need to stop looking at people with disabilities as less than. We tend to see people who may look or act differently than what we currently except as somehow wrong. But that is because we have not been around people with disabilities. They have been isolated and removed and treated differently from the start. We have been taught there is a preferred or typical or normal way to act, communicate, move, engage. This is so wrong. It perpetuates the belief that people with disabilities are exceptional, different, alien. We need to step out of the box that was created by able bodied white men centuries ago about what “normal” is. Just like Stella Young said, “I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.” We need to do better.