A Life with a Disability is a Life Worth Living

The Americans with Disabilities Act went into effect 26 years ago today. I’m 25. I have never seen life in the US without the ADA, and quite frankly, I don’t want to – because accessibility is still hard even when bare minimums are met.

The question I’ve been really thinking about lately is “why do people think that a people with disabilities have terrible lives?” Everywhere from the “Inspiration” overload to movies where the “happy ending” is the person is no longer disabled. Can’t I just be a person with a disability and happy? Yes, it’d be a stretch for me to say that being disabled is awesome and fun and glorious. It’s not. There are plenty of times when I get frustrated by my own disability. But it doesn’t mean that my life is terrible or I wish I could walk. I never knew how to walk, so I can’t miss it.

Why Can’t My Life Just Be Great?

Having a disability is just another way to live life. It’s different than 80% of the population, but it’s still just life. I still can feel happy, and I still get sad. I get angry, I make mistakes, I learn lessons, I grow as a person – I still have a life. And yet, I am sometimes portrayed as worse off than everyone else. Yes, I have way more medical issues. I’m more prone to kidney failure, meningitis, pressure sores, and blood clots. I have had more surgeries than I can count on both of my hands (although, not in 13 years) I have way more work to take care of myself and sometimes it gets hard and discouraging, but that doesn’t mean my life is any less.

Life Worth Living

My life is worth living. I love my life a lot. I have a great family, friends, and I’m blessed more than most. I know I deserve this life, and I’m stumbling my way through it to figure out how to live. But isn’t everyone my age doing the same thing? No matter how much I tell myself that I’m okay with my disability, and I’m confident, I’m always constantly getting the condescending “bless your heart” or the “I hope you feel better” — which I don’t feel bad, I don’t know why I need to feel better. It tests me sometimes, but I gracefully accept that they’re just trying to be encouraging to something they don’t fully understand – and that’s okay.

That’s Okay

One of my best friends in the entire world has the same disability as I, and when we’re out together 1) we have way too much fun 2) we answer plenty of questions, and 3) we don’t care. We wave at the little kids that stare (because let’s be honest – even I stare at people), we joke too much about our disability, and honestly, it’s no different. Except when there’s an item on a very top shelf when we’re at a store and we both stare at it like it’s going to just fall down on its own. BUT everyone has their problems, just have to own up to them. The jokes we tell about ourselves offend other people more than us, and that gets us laughing until we cry. Seriously, lighten up… Many of us aren’t easy to offend. If we’re joking about it, it’s okay to laugh.

Embrace the Differences

Every disability is different. I can do things that another person with the same disability cannot do, and that’s okay. I can’t do things that people with a milder form of my disability can do, and I’m okay with it. Yeah, sometimes we have frustrating days. But doesn’t everyone? Sometimes we all want to sit down and cry and sleep through the week. We’re all human. We all lose ourselves at one point just to find happiness again. My happiness is no less than any other happiness in the world. In fact, I believe it’s better.

No, Seriously, I’m Okay

I’m very happy, optimistic, and I love to spread the positivity. I share positivity with people who think that my life is less than theirs. I want to make sure they know I’m Okay. I’m more than okay. I haven’t lost anything recently, and it’s okay to be happy for myself. I didn’t gain the ability to feel my legs or walk, and that’s okay. I’m temporarily on this earth and I know it. I can wallow in the fact I can’t walk or I can embrace it and just keep traveling, learning, writing, doing what I love, and facing challenges head on. I’m in love with what I’m trying to create at the moment. It’s not here yet, but it’s in progress – and it’s okay!

My name is Samantha, I have Spina Bifida, I’m a paraplegic, I suck at people skills, confrontation, and hand eye coordination. But I’m good at staying positive, writing, and listening to people. My life is worth living, and it gets as time goes on. Not every day is good, but it’s leaps and bounds over what anyone had planned for anyone with a disability 26 years ago. The Americans with Disabilities Act is far from perfect, but the number of people with disabilities who are just living their life are slowly making this world a more accessible place.

 

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2 Comments

  1. Susan Clayton

    July 26, 2017 at 8:15 am

    Samantha, this is a beautiful post. I used to be an aide in a class for developmentally delayed fourth graders. We took a lot of field trips to Target because it was within walking distance. We loved when little kids (being little kids) would blurt out a question – 90% of the time the moms would be mortified, and we would say, “No, it’s fine, come and meet ___________.” Sometimes the families would be curious and come and visit with us, some hurried away. I always felt if we could change one person at a time to just be real instead of be afraid, we had a successful outreach that day! Anyway, this was a great post and I’m happy to share it.

    1. raeofsunnshyne

      July 26, 2017 at 8:21 am

      Thanks! It takes one person at a time sometimes, and especially with little kids, if you can show them it’s okay to ask questions then they’re going to be a better person for it.

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