Grey’s Anatomy and Media Portrayal of People with Disabilities

I have Spina Bifida. It’s not a death sentence, I have a more severe form than a lot of people with Spina Bifida. In 1991, most women did not know they were having a baby with Spina Bifida, and when the baby was born, often doctors would recommend letting the baby die of infection from the open and exposed spinal cord. Now, not only can you find out the baby has Spina Bifida around halfway through the pregnancy, many times fetal surgery is an option. It wasn’t an option until the late 90s/early 00s. Even with the option of fetal surgery or just having the baby, Around 70% of babies who are found to have Spina Bifida are aborted – and it’s normally the first thing that doctors recommend… in 2018

Representation

The portrayal of Spina Bifida on TV is rare, but it’s happened twice on Grey’s Anatomy. Grey’s is my guilty pleasure even though it’s inaccurate, dramatic and EVERY REGULAR CHARACTER DIES. Back when Meredith and Derek adopted their daughter from Africa, she was said to have Spina Bifida with clubbed feet. Once they did the shunt surgery and her casts were off it may have been mentioned one more time, but that storyline faded and she’s got no issues whatsoever. That doesn’t happen to ANY kid with Spina Bifida. If you watched the series starting now, you’d never know that even happened. I even had to go back to make sure it actually happened. I know, it’s a television show, plot holes are common, but it would’ve been nice to be represented at least a little

Fetal Surgery

On a more recent episode, there was a mother who has tomophobia (Fear of surgery). That’s fine, it showed something real. This soon-to-be mother was pregnant with a child with Spina Bifida, and a candidate for fetal surgery to close the hole in the back to potentially lessen the severity of Spina Bifida. I have NO problem with this. It’s up to the mother whether they want to go through this OPTIONAL surgery. It may improve some movement, and allow them to walk (normally with braces). It’s the mother’s choice. It’s a great medical advancement.

“Playing God”

However, the doctor in the episode BULLIES this poor mother-to-be into the surgery making it sound like it was the ONLY option for her baby’s survival. The mother is afraid of surgery, and you’re telling her the baby won’t have a good life without it. In a conversation with my own mother, she said it’s terrible that the doctor on the show felt the need to “play God” when the baby could be born and still live, but any time you go into a surgery, there’s a risk of losing the baby, or the mother, or both.

What It’s Like

Beyond that, fetal surgery is SO NEW, those babies who first had it are just now turning into adults, and no one knows how fetal surgery affects you going into adulthood. I know a lot of people with Spina Bifida who can walk with braces, only to have to go full time to a wheelchair in their 20s/30s. So is prolonging the time to go to a wheelchair even fair to the child? I know if I were able to walk in the first place and to lose something I had, I probably would go into major depression. I’m okay with myself and my disability because I can’t miss something I never had.

Walking with braces HURTS too. When I was a child, I had a brace. I went to physical therapy twice and week, and while I didn’t mind physical therapy that much, I HATED when I had to put on that brace and walk around. I fell so many times. It was great for my parents because they did get to see me stand up, and I’m not traumatized, but it wasn’t like I was always in my brace and it wasn’t a practical option for everyday life. I don’t mind using a wheelchair… except when things are 10 feet high.

It’s Still Spina Bifida

Children with Spina Bifida regardless of what level/severity are still likely to have hydrocephalus, need a shunt placement, and scoliosis and need back surgery to correct it. I almost died from complications of back surgery when I was 12. I’m still glad I had it. There are necessary surgeries and unnecessary ones. Doctors will recommend a million of them to you, and it’s okay not to take them. If I was terrified of surgery I would not let a doctor tell me I need to have fetal surgery for my baby with Spina Bifida because there are plenty of us living great lives.

What is Really Wrong

Doctors also shouldn’t go to patients homes and stalk them (yes, I know that was just for the drama of the show). They also should NEVER say your child will have a “better chance of normal” to scare an already scared mother into a surgery she doesn’t want. The patient checked herself out because she didn’t want it. That should’ve been the end of story. Instead, they continued to make it look like people with disabilities don’t have worthwhile lives.

Perception

My life is worthwhile – and I say this while I’ve been bedridden for over six months. Six months out of my lifetime IS NOT HORRIBLE. It’s annoying, boring, a little depressing at times, but it’s temporary. You can get in a car accident and be in the hospital for a year. You can become disabled in an instant. The media SHOULD NOT be portraying disability as a burden, a lesser way of life, or depressing. I know able-bodied people who have way more depressing lives than I do. It’s perspective. My life is fulfilling and I don’t want to learn how to walk, because I’d have to relearn how to live.

Media controls our ENTIRE life and seeing disability portrayed negatively on one of the TOP SHOWS ON TELEVISION is so disheartening. It shows little progress to inclusion. It further tells society that we’re not worth it, we’re sickly, we’re not equal humans. Yet, 20% of our population is disabled. In such a “progressive” show, I expected more and had the mother agreed to fetal surgery, it’d be okay. But not the bullying of a mother into it, because her child would’ve probably been just fine without it.

9 Comments

  1. Karen Rothe osband

    May 17, 2018 at 12:48 pm

    I truly enjoy reading your postings, Sam… and every time I do I think of how proud your Grandpa Dale would be of you. He would be proud of what an excellent writer you, what a strong person you are, what a superb fighter you are, and what an impressive woman you’ve become… but mostly he’d just plain be proud because he knew from the start how special you were. And you are. Hugs, Auntie Karen

  2. Karen Rothe Osband

    May 17, 2018 at 12:49 pm

    Oops, I left out an ‘are’ after ‘what an excellent writer you ARE’, but I’m sure you got my drift.

  3. zoey

    May 18, 2018 at 11:35 am

    Wow. I’m not caught up on Greys, so I haven’t seen this episode, but it makes me mad to hear about it. Which doctor was it?

    1. raeofsunnshyne

      May 18, 2018 at 11:40 am

      Arizona

  4. Grandma West

    May 21, 2018 at 3:47 pm

    Samm we are all proud of the beautiful person you are! You have a gift for writing and expressing truth! Keep on helping people see things through a broader perspective. You have so much to give and we appreciate your insights! Love you tons!
    .

  5. SLK

    May 23, 2018 at 7:25 pm

    I like your perspective. I think severely disabled people have worthy lives. My doctors tell me I’m supposed to be lying in my bed at all times and if I need to go somewhere, like the bathroom, I need to use a wheelchair. Disability is a life worthy living; our lives are not tragedies.

    1. raeofsunnshyne

      May 23, 2018 at 7:28 pm

      No one else should control how we live life. If we told those same people how to live, they’d be so offended.

      1. SLK

        May 24, 2018 at 3:01 pm

        I agree. I feel like we are seen as less than because of our disabilities, like we need to be taken care of. And some people do need help: I’m having support people come to my house to help take care of me. We should live how we want to live.

        1. raeofsunnshyne

          May 24, 2018 at 3:03 pm

          There is nothing wrong than needing help. Having that help should improve independence and live a great life.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.