Problematic Language and Spina Bifida

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I do not own this image!  Credit goes to Emory University

It is no secret that I have a disability.  You may have noticed, I write a blog about having a disability.  However, what you may not know is that the disability that I have is called Spina Bifida.  Don't worry, I am not going to bore you with all of the crazy, complicated medical terminologies that come along with that.  No, instead, I am going to link a website, so that you may read about the disability in-depth if you so choose:

Information about Spina Bifida

Before delving into the content of this post, however, allow me to provide some basic information about Spina Bifida.  This by no means will be in detail, which again, you can find at the link above.  This disability occurs when parts of the spinal cord are protruding from the back.  It can also cause a condition called hydrocephalus, which literally translates to fluid on the brain.  Both of these are fixed with surgeries in the first few months of life.  Most people with Spina Bifida will use a wheelchair to get around, however, some are able to walk with or without the aid of leg braces.

What I do want to talk about this week is a recent string of articles that have been all over social media for the past month or so.  I have only linked three of them below, but there are many, many more.  All of these articles have the same format and premise.   Each starts out by talking about a new procedure in uturo.  According to the Children's Hospital of Philadelphia (CHOP), this procedure will close up the fetus's back while still in the womb.  Research has shown that this procedure has reduced the need to divert fluid from the brain, improve mobility, and improve the chance of being able to walk without any sort of aid.

While this is a revolutionary surgery, the problem was not with the procedure itself, but with the language used in each of the articles that I had read.  For example, in the article written by CBS, this procedure would "have a much-improved quality of life."  The Fox 8 article stated that the child that this surgery is performed on will "have a much better future and quality of life than she would if she did not receive the surgery."  In the article written by WTVM, a doctor that had performed the surgery was quoted to have said, "by performing [the surgery], we are allowing the child to have the best possible outcome and significantly improve his/her quality of life."

These are just a few examples of the several articles out there that all say the same thing.  So what exactly is problematic about this "quality of life" language used?

All of these articles seem to imply one thing:  as long as you have a disability, specifically Spina Bifida in this case, you are incapable of living a long, healthy, and fulfilling life.  As a person with this particular disability, I can personally attest that this is simply not true.  Yes, I have a disability and needed surgeries not long after birth because of it, and yes, I use a wheelchair to move around.  However, none of this means that my life is any less fulfilling or worth living.  It just means that I have to do things a little differently from others, and that is okay.  I am in college, just like most people my age, in fact, I attend one of the best schools in the country.  I am heavily involved in sports.  I have great friends and relationships.  I am able to advocate for others with disabilities.  All of these amazing experiences would not be possible without my disability.

As a society, we must stop telling people with disabilities, especially children, that they are any less than their able-bodied peers.  This type of language only leads to low self-esteem in individuals with disabilities.  One of the accomplishments I hope to have is to prove to others that people with disabilities of every kind are equal to their able-bodied counterparts and to end the stigma that comes with disability.

Articles I talk about by Network:
CBS News
Fox 8
WTVM

Sources Used:
Children's Hospital of Philadelphia
Spina Bifida Association

Thanks for reading!

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