Five Lies You Believe Blog Title

5 Lies About Disability

Synonyms for disability – unwell, unfit, poor shape, invalid, weakness, detriment, inexperience. I’ll be honest, I was heartbroken when I went to the thesaurus and looked it up. I knew it wouldn’t be GOOD things, but now I understand why sometimes society thinks less of people with disabilities. It’s in the definition. Now, I’m not saying create a new word for disability, because that’s going overboard. But I do want to share some lies you believe about people with disabilities – keeping in mind every disability is different and some experiences are different than mine, but many of us do get these all the time.

 

  1. I’m very smart, I can hear, and I can see. Just because I have a physical disability, doesn’t mean I have a hearing or visual impairment, mental disability or a learning disability. And just because someone has more than one type of disability doesn’t make them any less of a person. You don’t have to shout at me to get my attention, or ask my best friend what I want to eat, or talk to me in a condescending tone. I’ll know. And I’ll politely tell you that it’s not necessary. I’ve heard stories of deaf people asking for accessibility and getting a wheelchair. How does that help a deaf person?
  2. We do leave our houses. We do go out and have fun. I have plenty of going out stories that will rival any able-bodied person’s. Some of us have jobs. Although, the employment rate for people with disabilities is extremely low – I’ll write about that monster in another blog. We go on dates, we hang out with friends, go to bars, concerts, and do everything an able-bodied person does. Because we’re humans that have the same kind of interests.
  3. I am 27 years old. I like boys. Many people with disabilities are in relationships and plenty of us are not in relationships with other people with disabilities. I’ve dated both able-bodied men and men with disabilities. Both are valid choices, both can be great husbands (because my main goal is marriage and babies – ask my best friend… I have the worst case of baby fever) Yes, many of us can have children and are terrific, capable mothers and fathers. You don’t need to be able to stand in order to take care of children. (It’d be useful, but it’s not necessary). And no, none of my boyfriends had to take care of me. I’m an independent woman.
  4. I am independent. I can live on my own. I can cook, clean, do my laundry, dishes, and kill spiders. I can dress myself, take a shower and even get into my bed. I’m actually pretty good at sleeping. Yes, it’s nice for some help, but too much help squanders not only independence but confidence as well. I’m confident I can live on my own because I was allowed to be independent. I don’t second guess myself when I’m cooking (mac and cheese, cuz let’s face it – I shouldn’t be around fire and knives ever).

The biggest lie of all – I am not suffering from my disability. I don’t live despite my disability. I’m not chained to my wheelchair. I am free – because of my wheelchair – to live independently as any 27 year old would do. I don’t constantly fantasize about what it’d be like to walk. I don’t dream about walking, and it might be different based on the person, and I’m not saying if God performed a miracle I wouldn’t be blessed and thankful. I’m saying I’m comfortable with my disability, educating others about my disability, and life with a disability. There are plenty of us who have reached acceptance. I can’t miss what I’ve never had. I’m not unfit, weak, or invalid.

Words That Confine

Everyone has words they hate, or names they hate being called. As a person with a disability, there are words that are considered “hateful” and “not politically correct”. Each person with a disability has a different opinion to what they prefer. To me, “physically challenged” is offensive, however, “crippled” has no effect on me, but to a lot of people, it’s the worst. Here are some explanations for phrases and words common in our society that people with disabilities consider confine them to their disability.

 

Wheelchair-Bound: This one is the biggest NO. It’s just misleading. We can leave our wheelchairs. I don’t sleep in my wheelchair, I can sit on the couch, in a car, in a booth at a restaurant. We’re not tied to our wheelchairs. They’re simply used as legs.

 

Confined to a Wheelchair: see above. But also, would you like to be confined to anything? Are we prisoners?

 

Crippled: I don’t have a problem with it when used in the right context, but it can be used as in a derogatory way, and many of us aren’t frail as porcelain china as the word makes us sound.

 

Inspirational: This one is purely situational. There’s a difference between inspirational and inspiration porn. We draw inspiration from a lot of places. But if you’re making yourself feel good by doing something out of pity for a person with a disability (i.e. the prom proposals from “able bodied” teens to their “disabled” classmates) that’s inspiration porn. There’s a fine line and society loves inspiration porn. (This topic will be discussed at length in another post this month)

 

Special: What. Makes. Us. Special? Most of us just want to be treated equal. We’re no better or worse. We don’t poop rainbows and definitely don’t feel special most of the time when addressed as such.

 

Warrior: I’m not aiming this at parents of children with disabilities. But please, please, please think of your child when calling them this. You may think you’re helping their confidence and making them feel better. But many, many, many of my friends with disabilities think this does more harm than good and it was a common word brought up when asking what to write for this. . Yes, we experience a lot. But EVERY HUMAN experiences pain. Someone’s level 10 pain, could be our level 3 pain. It doesn’t mean that person’s level 10 pain isn’t valid.

 

Gimp: Another word I don’t mind hearing and I don’t hear often (except between my friends with disabilities) I guess it’s like the black community having names for each other. It’s not allowed by anyone other than a person with a disability. I don’t hear it often enough to have more of an opinion, there’s just a derogatory nature about it, and there are WAY better words.

The Great Straw Debate Blog title

The Great Straw Debate

Who knew in 2018 I’d be writing about my right to have a plastic straw? It’s a straw. I love my environment, animals, ocean – but I also believe we as humans have the right to fair, accessible accommodation. In today’s society, if it’s considered harmful, we must get rid of it all together. It’s simply untrue. We’re allowed to make our own decisions. As humans, we are made to be the ones who take care of the environment – and yes, some people will never care. But unless you are leaving ZERO polluting footprint on this Earth (nearly impossible) you shouldn’t be telling ANYONE how to pollute the Earth. That sounds silly, but it’s dang true.1

It’s been said that balloons are a bigger pollutant in our ocean than straws. So, why aren’t we getting rid of balloons? I’m allergic to balloons. They have no purpose to me. I’m not out there protesting the use of balloons. Just because a plastic straw can be easily replaced by you doesn’t mean that it can be replaced as easily by everyone. Please think about how it feels to be told the ONE thing that helps you feel the least bit independent is being banned.

Cell phones are killing bees, but if we got rid of cell phones no one would be able to survive because we are all so used to them. Yeah, it’s not always a good thing, but if you really want to start saving the environment, don’t use a cell phone. Or a tablet. Or a laptop. Start DOING something individually instead of tweeting about it, posting it on Facebook, and creating bans. Bans inhibit our freedom. Learn to be a responsible human. I’m sure something you did recently caused more pollution than a disabled person being able to eat through a plastic straw.

While I was in the hospital, flat on my back, I relied on plastic straws for protein shakes. I couldn’t lift my head so I needed a bendy straw. They gave me a large reusable silicone-tube-like straw and eventually I didn’t use them anymore because I couldn’t wash it myself. I’d drink my protein drink, put it in my water, still tasted like protein drink. That also meant that it was super dangerous for bacteria. Some people with disabilities cannot just go clean off their straw if they drop it on the ground. It isn’t a reasonable accomodation.

In the American with Disabilities Act, it states People with Disabilities have the right to “reasonable accommodation” and I bet for some PWD, they’d argue a plastic straw is a “reasonable accomodation”. By default, this means, the failure to accommodate a plastic straw CAN be against the law and therefore you could fight it in court. I’m not saying it will happen, but I’m saying you could probably fight it and win. A straw is like 5 cents. It’s definitely reasonable to keep in case someone needs one.

I’m not saying you can’t change to more eco-friendly straws in businesses, I’m saying have them around in case someone wants that reasonable accomodation. There are far better ways to help your environment. I don’t see a lot of people picking up the trash on the side of the highway. There were plenty of things in elementary school I learned to help the environment and none of them included banning straws, so why do it now?

I’m not saying our environment isn’t important, but as humans, we cannot make even one person feel like less of a human being by taking away their right to reasonable accommodation. You wouldn’t want to lose your basic rights, would you?

 

Grey's Anatomy & Media Bias Vs. People with Disabilities Blog Title

Grey’s Anatomy and Media’s Portrayal of Disability

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 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.

 

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 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 story line 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

 

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.

 

However, the doctor in the episode seem to BULLY 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.

 

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. I did when I was a child up until sixth grade. 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 every day life. I don’t mind using a wheelchair… except when things are 10 feet high.

 

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.

 

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.

 

My life is worthwhile – and I say this while I’ve been bed ridden 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 a mother into it, because her child would’ve probably been just fine without it.

 

Are You a Bad Person for Not dating Someone in a wheelchair blog title

Are You a Bad Person For Not Dating a Person with a Disability?

The answer is short – no. What would make you a bad person is refusing to consider why you wouldn’t date someone in a wheelchair. If you’re just not attracted to the person, fine. That’s normal, I won’t shout ableism at you (although I never shout ableism – sometimes I think pulling the alarm on ableism does more harm than good – but that’s another topic for another time)

As a society, we seem to want to find some self-righteous human rights movement to join, help those “less fortunate” than us… and then continue about our selfish lives. It includes me, so don’t worry about it… it’s a human problem, not just an able bodied problem. I mean, worry about it because it causes hypocrisy among humankind – everyone’s a hypocrite sometime in their lives – and no, I’m not sorry for saying it.

I live in America, so I know how selfish, self-righteous and hateful we are. We hate the good, the bad and everything in between. It’s so easy to sound the whistle on someone who says something negative about a person with a disability. I’m not made of glass. I can handle someone not liking me. I have, and I’m sure I will again. The fact is, if you’re not attracted to a disabled person, it’s okay. As long as you treat that person like you would another able-bodied person. I would assume that’s with empathy and respect for the other person. Attractiveness is subjective, cultural and sometimes (a lot of times) superficial. Features, looks, personalities are different for a reason, and even I have a very superficial, specific type – bass fiddle guitar players with tattoos I mean wait… my grandma reads this – no one is exempt. We can try all we want to be fair, but life isn’t and neither is humankind.

For Valentine’s Day, I posted about a blind date gone wrong (link) – that scenario came to mind writing this, because I questioned if I was right to feel as hurt as I felt when I was rejected. The fact of that situation was he liked me before he saw that I was disabled AND I SAID I WAS DISABLED. He just ignored it until he saw it in real life. So there’s the difference. He liked me and then he judged me for physical reasons. IT’S OKAY. I dodged a bullet obviously.

Here’s where everyone can relate: NEVER be in a relationship because you think it’s right, or to spare someone’s feelings. In the end, it’s a toxic relationship. You mean well, but it does serious damage to self-esteem. It doesn’t matter age, gender, race, disability (and all the ones I missed) – it hurts no matter who you ask. Never stay in a relationship if you don’t want it, or it’s abusive, or you think you’re not good enough for someone else… chances are you’re too good for the one you’re with.

 

And that’s my two cents. Take it.

 

Disaster Date

I had to do a special Valentine’s Day post. It’s SUPER personal. I didn’t think I’d WANT to share it, but I thought it was perfect for Valentine’s Day (A day I really have never celebrated even when I was in a relationship).Y’all know by now that I’m a positive person who is really comfortable with who I am. It took me a long time to figure out how to accept myself… I assume that’s every teenage-early 20s female. I set myself to go up on a date. This guy, I had never met in person, but we’d been talking for a bit. It was my first date in three-ish years.

It’s good for me to mention I hadn’t catfished this guy. I had been talking to him like normal, and I had disclosed that I was in a wheelchair, but it apparently just went in one ear and out the other, because when he came to pick me up at my apartment, he was shocked. He was mortified. He came inside to talk to me and I was okay. I had expected some questions and he had SEEMED open, but only because he hadn’t taken all my cues and thought deeply about what I had told him.

 

This guy sat down, and he kept repeating “I don’t know if I can do this”. He shook his head over and over like I was an alien. Like I could never be desirable to anyone – I felt unhuman. Here I was dressed up to go to my favorite restaurant, and here he was asking me questions and trying to struggle with his moral complex. I almost felt bad for the guy. I said almost.

He then agreed to take me out to talk, but that it would just be that one time. I was okay with that, because 1 – I was starving, 2 – I’ve learned that in a relationship if someone doesn’t pass a first impression it’s never going to be a relationship, it’ll be pity. I value myself way more than settling for pity. I choose to educate and move on with life.

 

So after half an hour of back and forth conversation face to face with this guy, he said (and I remember this so vividly) “I’m sorry, but I think I need to just leave. This is too much of a shock right now.” TOO. MUCH. OF. A. SHOCK. I fought for days after that to reason that… yeah… it is a shock… it’s different for the able-bodied to wrap their head around not being able to have use of half of a body. But I couldn’t justify it, and chalked it up to him just being a person who doesn’t practice what they preach.

He didn’t even take me to dinner. He just left. He said “I know I’ll regret this and it will haunt me forever.” I’m probably an awful person for hoping it did haunt him at least for a little while.

 

It hurt. It hurt a lot. I did sit in my room and cry about it for maybe an hour. He texted me for two hours after trying to explain himself… like there’s some other way to explain how he’s shallow about his women. We all have body issues and things we can’t change. This guy tore me down for a bit, but I got back up. I’m okay again and it’s just some story I’m telling all y’all.

Just think about this, when you say you’re a non-judgemental, loving person… are you really? Are you really going to protest racism, but preach ableism? Before you tell me that it’s different… it’s not. A person is a person is a person. A black person didn’t choose to be black. I didn’t choose to be a paraplegic. Just. Think. Please….