More than half of adults recently surveyed would rather lose a limb, their hearing or their speech than lose their vision. What?! I heard this as I was driving in the car the other day and a news station reported on the results of a poll of 2044 Americans conducted by Johns Hopkins University School of Medicine and published in the journal JAMA Ophthalmology.
As the parent of a child with disability, I found it offensive and unfortunate, even as I understood what the study was getting at.
The respondents feared that their quality of life would be affected by a loss of sight, and that they would suffer a loss of independence. Some already had a taste of that and perhaps feared the future, as 63% of respondents reported wearing glasses.
Now, Johns Hopkins is a top-notch school that has made countless valuable contributions to the field of healthcare and medicine. I am certain they meant no ill; they seemed to have been aiming to establish the priority of vision health among people, and the need for support for ongoing research for vision and eye health.
Unfortunately, they didn't consider the impact of the study on people with disability. Saying that becoming disabled in one way—going blind—is worse than becoming disabled in other ways unintentionally demeans those other disabilities, and taps into the prevalent discomfort people have about disability.
"Using fear to help prevent one health issue hurts the overall special needs community—the last thing anyone wants is a division!" says Jen Lee Reeves, a mom of two, advocate for the limb different and founder of Born Just Right. "Not long ago, there was a trend on Instagram in which kids would ask followers to vote for the person who was the 'prettiest.' This left the kids who were not voted as the prettiest feeling sad and rejected. That wasn't the intent by the person who started the contest, but it left behind hurt. No one wins. This study reminds me of that digital beauty contest."
I seriously hope not to see other studies like this in the future. Can you imagine? "Researchers asked which disability is worse to have: 1) autism 2) Down syndrome or 3) cerebral palsy." It seems ridiculous, but it's not that far off from the question Johns Hopkins researchers asked.
I know that disabilities can be intimidating and scary if you don't know someone who has one. Before I became a parent, I felt only sorrow for children with special needs. Then I had a child with special needs, and realized that their lives can be just as happy, full and rich as anyone's. They were no tragedies. They were children.
The truth is, there is no hierarchy of disabilities. One is not "worse" than the other. Each disability has its own spectrum of challenges—and abilities.
And every type of disability has a spectrum of very awesome people.
I definitely have thoughts on this. All disabilities have their challenges, the things they make difficult. But as you say there really is no hierarchy. And as someone with mild to moderate hearing loss, I don't think people realize how challenging even a minor hearing loss can be. They think it's no big deal because there are hearing aids. Yes, and they do help considerably in most cases but they don't fix everything as they amplify everything not just what you want to hear. Technology is improving but still. This piece reminds me what the CSE director of the school district where my mom works said " If you have to have a disability, hearing loss is the one to have." Grr. I wish people realized that you really can't compare disabilities as they are all so different. But as you said, every type of disability has a spectrum of very awesome people.
ReplyDeleteThis really gets me going. We know people are notoriously bad at predicting how a change in life will impact them when they haven't experienced it. So what is the point of doing a study in which people "guess" which would be the worst disability?
ReplyDeleteI think this is an overreaction to a fairly innocuous study that was designed, as stated, to promote vision health. It is always interesting and useful to get people's opinions and thoughts on things; I don't want it to get to the point where one is not allowed to ask questions out of fear of not including some group.
ReplyDeleteIn response to the reply above- I too have a moderate hearing loss, but I've always agreed with what that doctor said; that it could be much worse. It's made me grateful for my normal vision and mobility and greatly increased my respect for those with other disabilities whose challenges limit their independence.
It's all about what you need and want out of life. Neither is absolutely "worse" than another, but some things are easier to deal with for some people than others. I cannot navigate very well in the dark, so a visual impairment would be difficult for me to deal with. However, when I meet someone disabled in this way, I'm not like "asdfghjkl how do you do it?" because I know that part of life is learning how to get around problems and even work with them to gain an advantage.
ReplyDeleteThe study is not "pitting one disability against another." It is intended to find what about their bodies people value the most. It's like asking if verbal, kinesthetic, or mathematical intelligence is better. There is no absolute superior when it comes to these things. The study was merely conducted out of a desire to know the way people think.
Yes, exactly
ReplyDelete