Disability, lifestyle, and nerdy thoughts.

Guest Post: 5 Things I want people to know about Spina Bifida

Sometimes when people aren't properly educated about Spina Bifida they will develop an opinion about you that is not accurate. In my experience, when people have inaccurate assumptions about you, they treat you different.  In order to prevent this, you have to educate them on what is true and what isn't. Here are five things I want people to know about Spina Bifida!

Hi, friends! Today, I wanted to do something a little bit different on my blog. I asked one of my best friends, Sarah, to write a post about Spina Bifida. Sarah and I are constantly learning from each other because our disabilities are so different. I thought it’d be interesting to share another perspective on here!


Sometimes when people aren’t properly educated about Spina Bifida they will develop an opinion about you that is not accurate. In my experience, when people have inaccurate assumptions about you, they treat you different.  In order to prevent this, you have to educate them on what is true and what isn’t. Here are five things I want people to know about Spina Bifida!

Sometimes when people aren't properly educated about Spina Bifida they will develop an opinion about you that is not accurate. In my experience, when people have inaccurate assumptions about you, they treat you different.  In order to prevent this, you have to educate them on what is true and what isn't. Here are five things I want people to know about Spina Bifida!
[IMG Description: Sarah and I sitting next to each other and smiling. We’re both in dark tshirts wearing glasses. Sarah has shoulder length brown hair and I’ve got super short dark blonde (basically brown but I don’t like to admit it) hair]

What is it?

For those of you who are not familiar with Spina Bifida, it is a birth defect in which bones of the spine don’t form properly around the spinal cord. You can have a very severe case of Spina Bifida where you are in a wheelchair full time or a very mild one with no visible symptoms!

What mobility aids do I use?

I use crutches to help me get around and a wheelchair for long distances. I don’t have a ton of mobility aids but sometimes people with Spina Bifida will get a shower chair to make it easier to get in and out of the shower. I personally don’t like shower chairs because I found it easier to not use one and just sit on the bottom of the tub.

Is it inspiring?

I cannot tell you how many times I have been told that I am inspiring! Most of the time they have no reason for saying it. Before you say I am inspiring ask yourself these questions: Why am I inspiring? What did I do that was so inspiring? If I did nothing, please don’t say I am inspiring because you think I need a compliment.  Having a disability is just life. It’s not something that is special. I have to do something remarkable or important for me to be inspiring, not just live my life!

How does it affect my day to day life?

I have a lot of physical challenges because I physically can’t stand up without my crutches. I get frustrated a lot because my crutches get in the way for simple stuff like getting things on high shelves but letting go of my crutches is not an option! I can’t stand on a chair like an abled person can because I don’t have the balance like they do. I’ve also had a lot of surgeries, too. I can’t drive like most people my age, and my disability has made it difficult to find a job.

What is one thing I wish people do differently when interacting me or helping me?

Sometimes when I am out in public with my caregiver, somebody will ask me a question but look at my caregiver. I wish people would look at me and not my caregiver! It hurts my feelings when you are talking to me but you won’t look at me! I also want people to know that I can hold a conversation just like an abled person can and talking slower is not necessary. If someone needs you to talk slower, they will ask you otherwise don’t do it!

Disabilities are not scary! Spina Bifida affects my daily life but it is not as bad as you may think it is. If you have any questions about my disability, just ask! I would be more than happy to answer them as long as they aren’t too personal. I hope you learned a little bit about Spina Bifida. If you have any questions or comments, feel free to leave them on this post or reach out to me on my blog, where I post weekly!

Thanks so much to Sarah for her guest post!

 



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