Have you ever felt that you are being misunderstood? That no matter what you say or do, someone or a group of people simply do not understand you, or your experiences or why you choose to live your life in the manner that you’ve chosen? If you have, welcome to my world, and to the world of many blind people, and in general disabled people. We constantly struggle with making the world see beyond our disability, and understand that first and foremost we are people. That we laugh, that we cry, that we love that we hate, that some of us are good people and some of us are bad, that we are men and women with our respective challenges, that we live and we die just like every other human being. This is a struggle we all face every single day.
I am a twenty-six year old woman. I am a Latina living in America. I have been fortunate in being the first person in my family to graduate from college in the U.S. I have studied abroad, held two interesting and challenging jobs, traveled the U.S. extensively, and am working to traveling my way around the world. I speak three languages, I’m a classically trained singer, and I love shopping. In other words, I’m your glamorous Latina friend, or your brother’s girlfriend, or your neighbor. But the thing is that I’m blind, and that makes me different.
Recently, the Foundation Fighting Blindness, an organization who funds research to find the cure to blindness, specifically related to retinal disease, started a campaign called #HowISeeIt. The first phase of this campaign was to have millions of sighted people put on blind folds and try to do every day tasks. According to the Foundation Fighting Blindness this campaign sought to “increase participants’ appreciation for two things: the gift of sight and the skills and strengths of their family members, co-workers, friends and neighbors who live their lives productively with low or no vision.” This makes no sense. It is like saying that our appreciation for bus drivers will be increased if everyone who has never driven a car, is given the keys to an eighteen-wheeler and told to get on the highway. Of course they will fail, they have no training! Or perhaps, they just were not born with the gift of being innately good drivers. But in my everyday life, people appreciating my adaptability seldom causes me joy.
Last week, my boyfriend and I flew to Montreal to attend an Adele concert, on the following day we boarded a cruise which took us around Canada before returning to the United States. At the end of the cruise I was so overjoyed, because despite some apprehension the crew on the ship did not treat us like wayward children. We were allowed to wander around the ship without being grabbed, followed or prevented from participating in the activities we chose. In short, we were treated like other passengers. This is such a rare experience in our lives however, that it truly became a highlight of my vacation. We chose to do a hike to see some gorgeous waterfalls in Charlottetown. This is an activity we were perfectly aware we were physically capable of doing; considering I was one of the youngest adults on the ship, and considering I have done rock climbing in the past I had no doubts about my abilities. The tour guide expressed some real surprise that we were taking part in this excursion. However, he did not try to stop us, which does happen, a lot. But decided to roll with it. He told me on our way up that we were the first blind people to have ever done this hike. Something I find hard to believe, but ok. And he continually expressed his admiration for us, and so on and so forth.
It is sweet for people to say how impressed and inspired they are by “someone like me” going around living her life, and doing what she wants to do. It is also so saddening. When I hear those words what I’m hearing is, I never thought someone blind was like me, I never knew someone blind had the capability to walk independently, to travel the world independently, to make decisions about their lives, to be successful. I never knew someone blind could live in this world without sitting around crying for days. But no one that tells you that you are inspiring thinks that they are saying that. The reason is that the world’s expectations for what I can do is so appallingly low. To most people, the blind and disabled are like children, we are precious, special, and they have a responsibility to look out for us. Let me add that I enjoyed our tour greatly, and our tour guide was wonderful. Sometimes it takes time for people to adjust to a reality that doesn’t reflect their previously held views. And after a while our guide realized that this really wasn’t that strange, that as long as people want to do his hike, they can, even if he doesn’t quite know how they will accomplish this task.
This brings me back to our friends at the foundation Fighting Blindness. It is admirable for any group of people to want to eradicate a health issue that affects millions. However, one must be careful on how one perceives those they are theoretically trying to help, and in turn how they portrays the people being helped to the world. In this instance, the Foundation Fighting Blindness has used pity and fear to raise funds, and they’ve succeeded. If I was to cover my ears right now, and try to cross the street, I wouldn’t know how to do it, I’m blind already. Thankfully, I have the privilege of knowing an extremely accomplished deafblind woman who has traveled the world, so I know it can be done. But, let’s pretend that I didn’t, I’d be terrified. I’d wonder how anyone could live that way. I’d hit donate, because I’m a person who cares about others, and I’d think I would be rescuing children from having to grow up with this terrible disability. In essence, the Foundation Fighting Blindness has chosen to make people do something without offering training, without talking about alternative techniques, without pointing out that most blind people in this country have received some kind of training from learning to read, to using assistive technology, to learning how to navigate the world. This is a misleading campaign, and a highly disrespectful one. Yet the Foundation claims, “Most people who participated in the challenge reported gaining new insight into the strengths and adaptability of people who have lost their sight.” Have they gained insight, or have their worst fears about blindness been confirmed? I doubt that they are more likely to hire me, instead they are probably more likely to invade my personal space, grab me without my permission, and drag me across the street when I am traveling because they’ll recall just how hard it was to pay for a purchase blindfolded let alone cross the street.
If you want to help the blind and disabled, I ask you to do this for us. I ask you to look up examples of successful blind people. I invite you to read publications like The Braille Monitor and Future Reflections. I ask you to see beyond our canes when educating us, when looking at our job applications, when having us travel with you. I ask you to tell your children that our canes are there as a tool that gives us information about our surroundings when we travel, instead of shushing them and whisking them away when they ask you what the “stick is for”. I ask you to stop assuming that you know what I can and cannot do. I ask you to stop thinking that just because you can’t imagine being able to do something as a blind person it can’t possibly be done. I ask you to see us as human beings. I do not want your pity, I don’t want your sympathy, and if I want your admirations is for real accomplishments, not because I can walk outside. I want to inspire you because I’m an immigrant girl who has achieved the American Dream, and not because I’m a blind girl who has the audacity to show up to a hike. I want you to find my friends astounding because they can power lift and not because they have the “courage” to use a treadmill. In short, I want you to raise your expectations about what I can do. Contrary to popular believe, it is your low expectations and not our vision which slows us down as we aspire to fulfill our dreams.