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?

 

How to Concert ADA Style Blog Title

I Love Concert Season

Concerts. I love them. Don’t ask how many concerts I’ve attended, because the number does not exist. It’s a lot, and ever growing. It’s exhilarating. It’s social. It’s music. Music is proven to heal, increase your mood, and your lifespan. As with anything with a disability, it’s a little different – but I see it as an opportunity, not a barrier. I always accept the concert-going challenge.

 

The only thing I remember about my first concert was thinking to myself “I’m six years old, and I’m out past my bedtime. This is cool.” I know it was Rick Springfield (or Styx – no clue which came first) I don’t think I went to another concert until the summer between 7th and 8th grade. I went to a country music festival (that you couldn’t pay me to go to now) that started my love of music – and the concert life.

 

My first concert at an actual arena was Rascal Flatts (to this day still a total fangirl). I had no idea what to expect, so it totally threw me off when a radio DJ handed me a radio meet and greet. It feels like you just won a Golden Ticket every time that happens. My first meet and greet I know I tried to take Jay DeMarcus home as a pet. It’s the first of many hilarious encounters.

 

How do I concert? It depends. It depends on the venue, on the day, on the time, and on my people. Yes, my people. I have great concert-going friends. Over the years, we’ve learned what’s best for us and how to fight (respectfully) to make sure we all have a great experience. Not every experience can be absolutely perfect, but I can say I’ve never hated any concert experience. (There was this one time – but management made up for it – so it’s forgiven) We always make a game plan. Whether it’s making sure we have enough time to get there early, calling to make sure they know I’m going to be there, talking to security (I’ve had my own security guards on multiple occasions) – there is always a way to make sure I get a fair shot.

 

Ninety-nine percent of the concerts I go to are general admission. Meaning, the people in the front of the line will most likely be heading to the front row. (Or if you’re in Nashville, the good seats at the bar) Arriving a few hours ahead of time and line-sitting can be as much fun as the concert. I met most of my best friends waiting in a line. By most, I mean all but one of my friends – And I have the best friends in the world. To me, a concert is more of a social event than seeing the artist. I mean, meeting the artist is cool and it’s fun to reconnect a year or two later to realize how much has changed in that time, but to me, it’s more of catching up with friends that have that same feeling when they hear their favorite song live.

 

Some venues do let people with disabilities in first IF asked (or you have a connection inside) This is why you always make friends with security, managers, the band. I’M NOT SAYING ABUSE YOUR POWER. I will never ever, ever step over the line (I mean, I can’t step anyway) but use your resources. Don’t beg, plead, poor me. The most effective way to get in early is to say, “Hey, I don’t want to get trampled or hurt anyone else. Can I get a five second head start?” Works A LOT of the time. If I’m not there early enough, my friends and I will work our way to a spot I can see. It’s not always the front row. Sometimes it’s a balcony. Unless it’s The Rave and they tell me the balcony is accessible but there’s a STEP TO THE BALCONY. But The Rave and I have made up. We’re cool now. Their security is fantastic.

 

Not everyone in the crowd can see either. If you’re short, stuck behind a tall person it’s unfortunate, but you’re there for the music and as long as there’s a friend with you it’s all okay, because that’s what concerts are for… listening to music, and friendship. I don’t EXPECT special treatment just because I am in a wheelchair. I know I DO get it sometimes. // SHOUTOUT TO THE MAN WHO GAVE ME MAREN MORRIS MEET AND GREET LAST YEAR // I try not to get too used to it, because I don’t want to expect it, and demand more than equal. I’m entitled to an equal experience as an able-bodied person. Nothing more. I can’t expect water bottle service in the front row every concert. (Same Maren Morris concert – The Rave and I really made up)

 

I have also learned that there are just some venues I won’t deal with anymore. There are festivals I won’t attend because, while they’re “accessible”, they’re almost impossible without help, and they’re not worth the crowd, time, energy, money. Certain festivals are great (Summerfest, CMA Fest) others are muddy, and grassy, and rocky and gross. They’re just so much work, and they’re in the summer so they’re hot with no easy way out. But it’s okay, there’s always another concert. The ADA only covers basics – having a section that’s accessible, accessible ticketing (which I find is a benefit in instances where tickets are hard to come by),

 

There’s always another concert… says the person who went to a Dan + Shay concert every month for six months straight. But they’re the sweetest people, so I have no regrets. Guys, if you happen to read this – love you, mean it. Miss you, mean it. Since I’ve been sick for like a year – exaggeration – I have to remind myself that they’ll be back. Except for Justin Timberlake. I’m going to that concert even if it’s the last thing I do. You only see JT once. (Yes I’ve mentioned JT in like three blog posts, but I’m really serious about JT – also it’s gonna be May soon – so it’s prime JT season) I’ll enjoy that concert from the last row because at least I’m there. I’m there, and I’m alive and music makes me happy no matter how I enjoy 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.

 

Please Don't Tell Me Blog Title

Life Worth Living

The Americans with Disabilities Act went into effect 26 years ago today. I’m 25. I have never seen 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 disabled 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.

 

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.

 

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 I’m supposed to live. But isn’t everyone my age doing the same thing? No matter how much I tell myself that I’m okay with being disabled, 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.

 

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 often get asked 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 don’t get offended that easily. If we’re joking about it, it’s okay to laugh.

 

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.

 

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.