I am 19 years old, and I have used a wheelchair since I was little because of a birth impairment called Spina Bifida. Read through the previous responses and AMA.

Comments: 138 • Responses: 68  • Date: 

fromflytospider8 karma

I'm the daughter of a person who uses a wheelchair and I just wanted to thank you for doing this AMA!

I know my mother's childhood was very difficult because she had to be raised in an institution since her parents couldn't afford the care her and her sister needed at the time (this was during the late 1950's). I was wondering how you feel about your childhood and whether you feel society is progressing towards more tolerance and a less medicalised view of disability?

Speedygonzales2111 karma

I'm glad you brought societal progress into your question, because I can answer both using that. My childhood was pretty good, I had friends and I was made fun of for disability related things maaaaybe once or twice. There wasn't any intolerance, but there seemed to be an unspoken understanding that talking about it in any way that was empowering or challenging stereotypes made people fairly uncomfortable, and that it wasn't always encouraged, not to mention that for a good portion of my school life I was VERY shy anyway and all of that put together scared me out of talking. This really changed in high school when I joined army JROTC and found a group of people who believed in me and I felt like they really cared. As far as societal progress, I'd say we're VERY slowly making progress. I think that opinions about disability that come from people with disabilities themselves tend to be generally ignored, and that we go between "understanding disability" as a society and not understanding it at all because we don't always listen. All other politics aside, I love president Obama because he has been very vocal about empowerment and disability (his father in law had a disability) and is the first sitting president to make unsolicited statements of support for people with disabilities. It makes me feel like I'm finally understood and not being disregarded..hope I didn't get too far off track there, that's just an example :)

Benditlikebaker2 karma

What is your role in the JROTC? I don't know much about it and I was wondering what difference it would make for a person if they were in a wheelchair

Speedygonzales211 karma

During my freshman year I was just a squad member. During my sophomore year I was a squad leader, but I only had 2 squad members so it wasn't that hard and I didn't really do anything. My junior year I was a platoon leader with about 16 cadets. I was just in charge of inspecting their uniforms, testing them on their JROTC and army knowledge, and making sure they were prepared for big competitions or major inspections. Really not so bad, actually pretty fun. My senior year was the real challenge. I was one of the four company commanders (we had alpha company through delta company, and delta company was mine) and I was in charge of 38 cadets from freshman through senior, I did company administration, ran the entire company inspection every Thursday, made sure ALL of them were prepared for major events, and was in charge of marching them at major events. I had to come up with my own system of keeping cadence by twitching my leg ever so slightly for every beat to make sure we were all in step.

Benditlikebaker1 karma

Thanks for answering! Thank sounds pretty cool.

Speedygonzales211 karma

Thanks :)

Frickinwicked1 karma

Don't get me wrong - I'm a lifelong democrat- but maybe you should do some further research into what Obama has actually done for people with disabilities generally and Spina Bifida in particular. One place to start - the collapsing of disability programs at the CDC and a director of CDC that doesn't believe disability programs and research are within the agency's mission (the director is appointed by the President). Including gutting the funding for the Spina Bifida Program at the CDC. While mentioning disabilities is nice - the merit of a person should be measured in their deeds not in their words.

Speedygonzales211 karma

He's done a lot more than that. on several occasions he's worked very closely with members of congress and the senate on disability issues, appointed some very well known people with disabilities to his offices to help shed light on the issue, signed several initiatives to encourage independent living for people with disabilities, and has a program so that people with disabilities with the proper college degree can work for advocacy within the White House. He can't control what the director of the CDC says or does.

thehanny7 karma

Have you had sex? how did that go? Im guessing you got to be on the bottom by default. lucky.

Speedygonzales216 karma

I'm waiting for the right girl, and you'd be surprised about the whole position thing. there are tools for that.

redtracer7 karma

PSA: HEY PREGNANT LADIES, MAKE SURE YOU GET YOUR FOLIC ACID.

Seriously, you get your folic acid and the risks of your child having spina bifida is much, much lower.

Speedygonzales217 karma

I don't look at spina bifida as a deficiency, it's a part of my identity. it's okay.

redtracer7 karma

Good on you mate, but I'm sure most people don't think that way.

Speedygonzales21-1 karma

And that needs to change. That's ignorance.

redtracer5 karma

Just tryin to spread the word, the condition is easily preventable and not a lot of people know it. Sorry if I offended, this is probably both the best and worst place to do so.

Speedygonzales210 karma

Yeah..not the most sensitive thing on earth, but I get it. The problem is when people focus on a cure so much that they forget about acceptance.

redtracer4 karma

That seems to be something humans have a tough time grasping.

Speedygonzales212 karma

They can though, it just might take a while. We're getting there.

boscastlebreakdown2 karma

My sister has cerebral palsy, and someone asked me whether, if there was a cure, I would take it. Uh, it's not a cure, it would just make her into someone different. It would be cool if someone could help her with the muscle tension though. That's a cure.

Speedygonzales214 karma

Exactly

Cadmium_Mellow7 karma

Do you still get poon?

Speedygonzales2111 karma

That was blunt, but yes I do. some girls are shallow, but for the most part I date just as much as anyone else.

DIlframix11 karma

And if you do, are you a sex-god? I can only assume your body compensated for your lack of leg power with a massive dong

Speedygonzales2111 karma

That's a secret.

Rogerwilco19741 karma

Good old DIlframix. He asks the questions that NOBODY else is thinking!

Speedygonzales212 karma

I'm sure other people are thinking it, he's just the only one with the guts to ask it apparently ;)

Rogerwilco19743 karma

If people are actually thinking that a reduction of leggish capacity can lead to improved dongosity, then I truly despair!

Speedygonzales211 karma

I know right? I've known a fair share of manwhores in wheelchairs.

shermanmccoy6 karma

[deleted]

Speedygonzales216 karma

Does curb jumping count? I love jumping curbs, but I don't really like anything too insane because I have a bit of an issue with heights. If you wanna see some REAL jumps in a wheelchair though, look up Aaron Fotheringham on youtube. he's a wheelchair BMXer (Yes, you read that correctly) who also has spina bifida and has been several times on a worldwide tour with NitroCircus. He's known for landing the first backflip in a wheelchair, and has his own special one now that he takes off MASSIVE jumps.

shermanmccoy6 karma

[deleted]

Speedygonzales215 karma

I go down escalators. People who have two perfectly good legs (nothing personal) tend to crowd up the elevators, plus riding escalators is more fun and scares people. I had a guy watching me at the mall who spilled his food because it freaked him out.

kathskates1 karma

I ride the same WCMX chair as Aaron (though I think his Megaramp chair is tweaked a bit). Highest I've ever dropped in off of is a 6' quarter. I get so sketched out by anything higher!

Speedygonzales211 karma

Cool! I've been thinking of switching from tilite to colours, do you like yours?

Balthanos5 karma

A chiropractor once tried telling me that I had a "mild" case of spina bifida. That was a hoot.

Speedygonzales218 karma

That's totally possible. Spina bifida ranges from barely there to very serious.

[deleted]0 karma

[deleted]

Speedygonzales212 karma

LOL.

muffinkisses4 karma

flynn?

Speedygonzales212 karma

huh?

Cynnimon4 karma

Hes making a joke about the son on Breaking Bad named Walt Jr. ... For a few episodes he insisted on being called Flynn. :)

Speedygonzales212 karma

Gotcha :) thanks.

[deleted]4 karma

[deleted]

Speedygonzales215 karma

Oh God, I could go on and on. There are two that stick out most in my mind at the moment, I'll add more as I think of them if you'd like. Ive been asked "how do you go to the bathroom?" And "how do you have/can you have sex?" The first one there is no need for anyone to know, and the second one is a very personal question for me that I only reserve for girlfriends, my doctor, and things like AMA (I can by the way, in case anyone is wondering).

Cynnimon1 karma

While I understand those are of course very personal questions, they are things people wonder about because its something everyone does/needs to do in their day to day lives, and people are curious how you manage/get things done for a lack of better words. Hopefully they werent asked in a douchy way (which if they were, Im very sorry you had to deal with that) but maybe that sheds a little bit of light on people and their lack of tact :)

Speedygonzales213 karma

Again, as I said, curiosity about disability is not a bad thing. That's why I started this AMA. However, people can be quite rude sometimes, and that's never okay or excusable

scourgedemon3 karma

How do you push yourself to accomplish tasks that can be difficult for someone with your condition? Any advice to others with your condition?

Thanks for doing this AMA!

Speedygonzales218 karma

Pushing myself to do difficult things isn't really something I or many other people with disabilities give much thought to. Everyone's got challenges whether or not they have a disability, and the fact that mine are unique doesn't make them better or worse. As far as advice goes, I'd say this: you have every right to be proud of yourself AS YOU ARE. There is nothing wrong with you, and you don't need to be changed.

scourgedemon3 karma

Thanks for the words of wisdom. My uncle was born paralyzed from the waist down and has been living that way for 40 years. Last year he lost his leg after he broke it by falling from his chair. The doctors put the wrap on it too tight, circulation was cut off, and so his leg had to be as well.

Because of this he's been really down in the dumps, as people look at him now as a freak because of something that was never his fault. It's a shame because he is a really nice guy and I'm proud to call him my uncle. I'll mention what you said here to him, and maybe it can change his perception on this personal tragedy. Thanks so much.

Speedygonzales212 karma

Tell him I said that the world is changing and he can help it continue to change. Remember that you're a person of value and that the real disability is ignorance. KBO (keep buggering on) as Winston Churchill would say.

potatoofthenight3 karma

My cousin, who is in his 40s now, has severe spina bifida. He makes his living writing reviews of hotels re: their accessibility to people with disabilities. He gets paid to travel the world and stay in swanky places and they treat him like gold because they want a good review.

No question, just a baller career suggestion.

Speedygonzales211 karma

Thank you :) that's a great job as well as opportunity for activism. I've found my niche in writing.

amyneko3 karma

I have Spina Bifida too. internet hug

Speedygonzales214 karma

=)

sez6653 karma

Thankyou for all you have shared here. I am able-bodied (aside from the failing bits from old-age and injury!) , and you have answered many questions that I would not have asked out of fear of my own embarassment. Social media is a wonderful thing; I am learning much which will help me be a better citizen

Speedygonzales212 karma

I'm glad you appreciate it. please feel free to ask questions =)

Rogerwilco19742 karma

I've a 17 year old daughter with spina bifida. She's not the most driven kid in the world, and nor is she the most academically gifted of our children. She has no social circle, prefers the company of adults to her peers, has no real passions or interests and really just goes to her college art diploma course for three days a week, and watches TV for the other 4. So in most, if not ALL, respects, she's a completely average teenager...

My fundamental issue is the fact that the level of her defect (apologies for not being able to remember the exact vertebra concerned, but it's pretty low) means that she is able to walk a little with a walker, albeit slowly and not for great distances) and we have been told that if she walks a lot, she'll get better and better at it, but she WON'T.

She uses her wheelchair whenever she is out of the house, and will crawl around the floor unless she is reminded to please use her walker.

It's her life, so if she wants to be wheelchair bound for the rest of her life, there's not a great deal her parents can do about it, but I'd be interested to hear about your experiences. Should we try and push her - tough love - for her own good, or should we just let her be?

I'm afraid that her lack of physical exertion will lead to a sedentary life of eating, sleeping & obesity that will only make things worse.

Thanks for your time!

Speedygonzales213 karma

Try mentally reframing the idea that she likes being in her wheelchair. I hated my walker as well when I was a kid and haven't used it since. I eat fairly healthy, I work out, maintain a healthy weight, and I have no interest in walking because I'm happy and healthy the way that I am. The problem is not that she doesn't like her walker and prefers her wheelchair, but that she lives a sedentary life IN her chair. I'd say let the whole walker vs wheelchair debate go. We need to encourage the idea that there is nothing wrong with not being able to walk or having a disability. Disability is not the problem, it is a part of diversity. Ignorance and lack of acceptance is a problem. Encourage healthy eating and exercising maybe by doing it with her, and encourage hanging out with and meeting kids her age, both with and without disabilities. I was the same way at 17, I was very insecure and felt like people didn't accept me. Some people won't, but if she opens up and lets people learn about her (only as much as as is appropriate of course) then life will get A LOT easier.

Speedygonzales211 karma

I must have missed the part about crawling around on the floor. While I "stand" by everything else I said in the previous comment, crawling on the floor is probably not a good idea. There's a pressure sore risk and its unhygienic.

kathskates1 karma

I just wanted to tell you I really appreciate this response! I don't have Spina Bifida, but I do have a similar condition (CP). My parents were told to keep me walking, and by 19 I was begging for a wheelchair. They said no and so I was forced to struggle for years, which eventually meant I became pretty inactive due to pain and fatigue. I finally got my chair a couple months ago and I love it. I have such an active lifestyle now, and even though I only use the chair about 30% of the time I prefer being on it and have so much fun with it. Active life on a wheelchair>sitting around because you don't want to/can't use a walker/crutches/legs/etc

Speedygonzales211 karma

I'm so glad you agree! I hated my walker when I was little, and stopped using it altogether very quickly. I can't speak for everyone of course, but personally my walker made me feel self conscious and vunlerable.

Speedygonzales212 karma

The thing I'd like to impress most here is that using a wheelchair is not a lesser state of being, it is merely different.

Mrmentortv12 karma

Are you still able to get erections?

Speedygonzales215 karma

Yes.

cheti2 karma

Do you feel it ?

Speedygonzales212 karma

Yep.

Thebigsexyasian2 karma

Thanks for doing this! A woman came in to my anatomy class and talked about her son who also has this. She said how he would sometime mess around with his teachers by getting out of assignments or such activites because of his condition when he just really wasn't interested in partaking in them. Have you ever done something similar for your (for lack of a better word) advantage?

Speedygonzales218 karma

I did a couple of times, but then I realized that it was way too easy and if someone DID find out, it would mess with how much they trusted me in the future and how much leeway I would get for real medical issues. I don't condone it at all, but many ignorant people like to assume that it is something that people with disabilities do "because they're lazy", and that's not true. Everyone plays hookie at one point or another, and we're no different. It's not a part of being disabled, it's a part of being human.

HPWombat2 karma

I just wanted to say that I love this answer.

Speedygonzales212 karma

Thanks :)

Cardaver2 karma

Do you use a motorized wheelchair or hand-powered? Thanks!

Speedygonzales215 karma

Manual. (hand powered) Using a power chair isn't recommended because it doesn't work your muscles very well and it's hard to stay in shape. Most people don't use them unless they REALLY need them.

Cynnimon1 karma

Do you ever get tired of using your arms all the time to get everywhere or are you pretty much super buff and dont notice it anymore? :) Also.. can you do any neat tricks like spinning around really fast or leaning back with the foot portion off the ground? (sorry if that last one was vague lol)

Speedygonzales213 karma

I don't really get tired anymore. I go on jogs (I go outside and roll around at jogging pace. Just wanted to make sure that made sense) and when I first started out I would go for 45 minutes to an hour, but now if my chair is in good shape and it's a good day outside I can pretty much go until I get bored. My longest is about 3 hours. I can roll around in a wheelie, and lean up against a wall in a wheelie, but that's it. The standing on the front portion of the chair trick is actually a really popular pro wheelchair basketball trick, but I never learned it when I played. It's really hard.

Speedygonzales211 karma

nope

bb_pitted2 karma

Would you get offended if i offered to help you up a hill or something thats looks very difficult? Its only because I would want someones help if I was in that position.

Speedygonzales213 karma

If you offered, no. That's perfect etiquette. If you forced help on me, yes. What we get upset at is often when people just assume we need help with something. That makes us feel like what we're doing isn't good enough or like we're being babied. A person's independence should stretch as far as they want it to.

EDIT: it's also important to bring up personal space here. If you walked up behind an able bodied person you didn't know, picked them up, and carried them to their car, that would be considered some sort of assault or harassment. The problem is that it isn't usually seen as the same thing when you add disability -_-

bb_pitted3 karma

Yeah that actually cleared up the line for me. Cheers mate, hope everything goes well for you.

Speedygonzales215 karma

I'm glad, and thank you. I'm actually pretty stubborn about my independence and I've been known to do " really difficult" things just to prove to people that I can.

icantfeelmymouth2 karma

My youngest little sister was born with spina bifida as well as hydrocephalus. She's about ten years younger than I am and she's only 11 now. She can't feel anything below her waist as has weak abdominals so she's completely dependent on our mother (who I don't live with due to having divorced parents). Because she basically can't go anywhere without our mom, she has a hard time making friends and can get really frustrated with... just life as a whole. She's extremely self-conscious about her appearance and worries that she burdens people with her presence. As her biggest older sister (there's another one of us girls about 3.5 years younger than me) she really looks up to me. A lot. As such, I try my very best to encourage her and remind her that, no matter what, she's still just a really great kid. I have a hard time making friends and got bullied a lot so in some ways I can find the things to tell her, but I feel like I could never * truly* understand what it's like for her. I guess the question I'm trying to get around to is... can you think of anything you wish someone had told you when you were a kid? Or is there anything someone told you that really helped you through hard times? Really, just any advice I could give her that would make any difference.

Also, thank you very much for being open and doing this AMA! :)

Speedygonzales215 karma

Tell her she's just like any other girl, she just gets around a little differently. I wish someone had told me that all people should be proud of who they are, and disability is no exception. She has nothing to be ashamed of, and make sure that she knows that she doesn't have to change. She can be happy as she is. Ignorance is the real problem, just do your best to educate people, and do your best to make sure she does the same.

Speedygonzales211 karma

I used to be very self deprecating as a kid because it was what I believed I deserved, and that that was just the way it was. Don't let her fall into that.

ezera792 karma

I have a dear friend with SB. He's a life guard at a pool during the summer and is capable of a lot more than most people think. His van is rigged to allow for hand controls rather than pedals and so on. He's been in and out of the hospital with abscesses on his legs and hind quarters, pressure blisters and the like. His friends worry he isn't taking great care of himself some times. Is there anything you can tell us that can help? Thanks for the AMA.

Speedygonzales213 karma

It does sound like he's not taking care of himself. He should get a handheld mirror of some sort so he can check himself everywhere for pressure sores. I've had 2 in my entire life, and if you make sure you check yourself, have a good chair seat like a Roho air cushion, and make sure you're not sitting on hard surfaces for too long they're totally avoidable

ThrowawayMyBitches2 karma

There's this dude that goes to my school who has a carbon fiber wheelchair. Fucking awesome right? I want to talk to him about how awesome it is but I'm worried I might put my foot in my mouth. If I were to approach you to talk about your chair, how could I do it in a respectful way?

Speedygonzales212 karma

Start off slow. Just say hi and have a normal conversation. Let the conversation go naturally, and if there's a lull or break in conversation, casually tell him you think his chair is really cool (almost everybody in a chair loves hearing that). If you like someone and want to ask them out, you have to get to know them a bit first, right? it's the same concept: take it easy.

zk32 karma

To what extent is your spina bifida? I.e. occulta or fully myelomeningeocele?

Speedygonzales211 karma

Myelomeningocele. I can't use my legs, and I have hydrocephalus.

josh1122332 karma

In your dreams, do you walk or are you still in a wheelchair?

Speedygonzales212 karma

Either I'm in my chair or I'm just sort of floating around

wiggins13131 karma

I dont know if you will see this, but my cousins son was just born with Spina Bifida. What was it like growing up and how did your family treat you and do you wish your family had treated you any differently? Any tips that you would give him (he is 1) when he got older?

Speedygonzales211 karma

Thanks for your question, sorry it took me so long to get back to you! Growing up was great, but there are several things that were frustrating that you unfortunately only learn with age. In school I was often the target of being put off to the side or treated like I was in the way just because I was in a wheelchair. That's a frustrating thing for parents. The kid wants to not make a fuss so he can "fit in". As a result, he or she doesn't bring up the fact that they're being treated wrongly or tries to downplay it to their parents when they want to do something about it. As I got older I learned to become more of an advocate for myself, but I realized that in favor of not making a fuss I allowed people to pity me and stereotype me, even though I actually LIKED my wheelchair. My family has been amazing, but like any parents they did make some mistakes, and there are some things that I wish they did differently. Sex is a normal part of my life as much as anyone else's, but my parents basically gave my siblings the talk at around 11, and waited to talk to me about it until I was 17...which after 4 years of public high school, curiosity, and internet porn didn't really tell me anything I didn't already know. I know that partly it was because they're REALLY awkward and squeamish about sexuality and relationships in general, but I think a lot of it had to do with the fact that it's a slightly different situation. When he gets older I'd tell him

  1. Don't ever let anyone tell you no because you have a disability, especially if it has to do with school or any other public activity. You has a right to it, and anyone who tells you otherwise is acting illegally.

  2. As long as you're healthy and happy, do what YOU want and be your own person. This means: a) See number 1. If someone with a disability hasn't done what you want to do before, find a way. b) If you prefer getting around a certain way (i.e. Wheelchair or walker) then that's what matters. It always makes me really angry when people think I'm ridiculous for not using a walker, as if being a wheelchair isn't something to be okay with. If the reverse is true for him, that's okay too.

  3. If you want to walk someday, that's okay. However, don't let anyone tell you that having a disability is somehow wrong or lesser, because as our society is increasingly showing today, it's not.

  4. Try to be outgoing. If you accept yourself and put yourself out there, most people will accept you too. In turn, these people can stick up for you when things go wrong.

  5. Take care of yourself. Living with a disability is no big deal at all as long as you eat right, take medicines when you need to, keep good hygiene, and be sure to exercise.

  6. Educate people who don't know much about you, and understand that while there are some jerks out there, the majority of people mean well and want to learn.

wiggins13131 karma

Thanks for the Reply, its fine it took a while haha this thread is quite old... Background: I am currently 18 and although I know that I cant change the world, it doesn't mean that I wont try to at least make my mark. Saying this, I am planning on studying Biomedical Engineering next year in college and one thing that I really want to do is focus on what people actually need.

My question: What device(s) do you wish exist / have existed to help with Spina Bifidia, or any disability in general?

Sorry if that made no sense but it is late haha and i wanted to reply sooo :P

Speedygonzales211 karma

No problem! I want to see more wheelchairs out there made of lighter materials, more stylish, and capable of going from compact to being a variety of sizes..essentially, a sort of wheelchair transformer. And I'm not kidding about that- it's really frustrating when you go to a crowded place and have to shout yourself hoarse to be heard because you're shorter than everyone else.

Danny_Mc_711 karma

I read The Spiral Cage years ago, you might be interested.

http://www.graphicmedicine.org/comic-reviews/the-spiral-cage/

Speedygonzales211 karma

Thanks!

famicomical1 karma

I took care of kids with spina bifida last summer. The place is called camp aldersgate. Really nice kids.

Speedygonzales211 karma

I went to a camp called Camp Jon Marc for kids with SB in Texas.

Cynnimon1 karma

Do you need help with things such as getting dressed or putting on your shoes? If so, is it something that took time to accept? And if not, did it take a lot of practice to manage? Sorry if they sound offensive, but am curious! :) Also... what is your favorite hobby?

Speedygonzales213 karma

Nope, I'm 100% independent. Literally 100%. And it's hard to say what my favorite hobby is, but I love to ski, scuba dive, work out, read, and write.

Tokyocheesesteak1 karma

What's your opinion regarding the portrayal of wheelchair-bound people in popular culture? Is it generally fair/accurate? I know, many shows/movies shoot for the lowest common denominator and they are a superficial business (high standards of beauty apply to protagonists and everyone else is generally there as a story assist), but even within these parameters, what's your take on it?

Btw, thanks for the AMA, there is some real good stuff peppered throughout the Q&A.

Speedygonzales215 karma

It's getting better, but they still have a ways to go. I'm an actor, filmmaker, and published writer (I've made a small PSA, been published in New Mobility magazine, a popular and mainstream magazine for people with disabilities that has been praised by the AP, and in the meantime I've been writing scripts) and I've noticed there are several problems with portrayals of disability. First, they go for the stereotypical portrayal of disability where the disability is a problem that the main character is fighting. This is largely exaggerated and inaccurate, and prevents people from seeing people with disabilities as average everyday people. secondly, they give roles involving disability to non-disabled actors. I'm all for giving the part to the best actor or actress, but to us it's the equivalent of putting somebody in black face. Not to mention that performers with disabilities are nearly invisible in film, T.V., and stage, and every actor who portrays a disability seems to get very high honors (i.e. oscars and emmys) for it. All of these put together don't allow for pride in disability. Breaking Bad (though I've only seen a couple of episodes, and it's not my kind of show) and Glee are two shows where I'd say the writers and actors "get it" when it comes to disability.

Tokyocheesesteak1 karma

This is exactly what I meant when I said they are a superficial business and only "traditionally" good looking people get protagonist roles. Everyone else is either a caricature or an attempt at "honorably" dealing with the character's "abnormality". Accented people are the subject of culture shock jokes and foreign references in every other scene they participate in, even if they've lived in their country of residence longer than anyone. Overweight people are either played for comic relief or are reserved for supporting roles. Short people are the regular butt of short jokes, and little people are either portrayed as freaks, footballs to be tossed around, or heroic individuals whose whole life revolves around nothing but working around their "debilitating disability". Non-whites inevitably have to deal with jokes and/or dialogue revolving around their "exoticism", regardless of their actual origin; black people are "lucky" because in the past decade or two, the focus on their "exoticism" has been slightly toned down. I can be listed in at least two of the abovementioned groups, so the feeling is all too familiar. These things are usually not done out of sheer malice but because filmmakers/moviemakers either don't know any better, think they are being funny through "edgy" humor, or go for what sells. Even if you're perfectly "normal" but have a somewhat 'funny'-looking face, get ready for outsider roles.

Speedygonzales212 karma

We're getting there though. Robert David Hall from CSI Las Vegas, RJ Mitte from Breaking Bad, and Ali stroker and Lauren Potter from Glee are just a few examples.

Korlis1 karma

I was also born with Spina Bifida, among a few other defects. Net result was a tethered cord; malformed vertebrae at the base of my back had pinched my spinal cord and the growth of my body was causing tension on my cord and the stem of my brain. I was always cold, had terrible headaches. I was fortunate enough to get into Sick Children's Hospital in Toronto. I roomed with a kid who was not as lucky as I was and he was in a wheel chair, like I would have been in about a year's time if not for the surgeries. I think about him sometimes, and how close I was to a wheelchair myself. This just reminded me of all of it.

Speedygonzales212 karma

Being in a wheelchair isn't unlucky, it's just a different form of transportation.

Korlis2 karma

Touche. I meant no disrespect. I'm not great with words.

Speedygonzales213 karma

No worries, we're all learning.

Ninja_OT1 karma

My sister has SB and has recently finished school to be an LPN. I am currently the only member of the family who thought this was a great idea and supports her 100%. I keep telling her to forget their negativity and live her life. It's tough because there were times when she started to do something that she liked and a medical emergency sprang up that stopped her progress cold. I feel like, even if she never works a day as a nurse, finishing school has helped her self-esteem. I don't have a question, I just want to tell you and my sister to ROCK ON!

Speedygonzales211 karma

Thanks =)

clipmann1 karma

How do you (if at all) do you fight the "poor me" blues?

Speedygonzales211 karma

I don't, that's a stereotype. The "poor me blues" is usually part of a grieving process for those who have become disabled through an injury. Even then, the "poor me blues" is not an eternal thing. We figure out how life works in a chair and from then on it's just living

I_call_people_creeps1 karma

I just wanted to chime in and say, you are amazing, keep believing in your dreams!

Speedygonzales213 karma

Thanks!

Kecemis1 karma

What is one thing you'd love to do, sports or otherwise, that your condition prohibits? Obviously they have things like special olympics, but if you wanted to try out a marching band I would immagine you would run into problems :(

Speedygonzales213 karma

There really isn't anything. What many people don't know about disability is that we are no more limited than any other group. People with disabilities aren't limited by their disabilities as much as ignorance and an unwillingness to encourage empowerment from larger society. Having a disability like being in any other group or society is about what you know you can do, and what you are let to learn how to do. Also I have a correction on something in your question. I wouldn't participate in the Special Olympics, I would participate in the Paralympics. The Special Olympics are smaller local events and participants often have intellectual differences like Downs Syndrome. the focus of the competition tends to be on a spirit of camaraderie and and encouraging empowerment. In comparison the Paralympics are for people with physical impairments, take place in the EXACT SAME place as the Olympics a few weeks afterwards, and the focus just like the Olympics is on competition- I used to play adaptive hockey with a few paralympians and they will kill you for a gold medal and not think twice about it. Very cutthroat. Respect to people with intellectual differences, both groups participants work EXTREMELY hard, and both are honorable endeavors, but they are in fact different. And no frowny faces please, I like being in a wheelchair =)

Speedygonzales211 karma

I was in JROTC (Junior Reserve Officers Training Corps) as a kid in high school. JROTC is basically a leadership class taught by retired military personnel, but run by students. students wear military uniforms, learn drill and ceremony, and military history. I was the only kid in a wheelchair to make it all four years, and graduated as a cadet captain in charge of 38 kids.

cynicinorbit1 karma

Would you rather fight 100 duck sized horses in wheelchairs or 1 horse sized duck in a wheel chair?

Speedygonzales215 karma

100 duck sized horses..just because the idea of finding 100 duck sized wheelchairs for 100 tiny horses is really cute..lol.

Speedygonzales211 karma

by the way, does anyone know how to upload pictures on here for proof?

Canofsummer1 karma

Xbox, Ps3, PC?

Speedygonzales212 karma

can't choose, they're all good for different reasons.

eiasashhab1 karma

Your mother should've taken b12 and b9 vitamins bro..

Speedygonzales212 karma

Though I understand you have good intentions, please don't criticize my mom. My mom is an amazing, mom, and a very careful mom. This was back in 1993 when the causes of Spina Bifida were still unknown. While I did create this AMA so that people could ask me anything, I did not make this with the intention of discussing what my parents "should have done" for several reasons. 1. I'm 19. it's been YEARS. There's no use. 2. My disability is a part of who I am. I'm happy, and I don't want to change. 3. This isn't a question.

Mrmentortv10 karma

Have you ever seen the gallon smashing prank video on YouTube?

Speedygonzales212 karma

I haven't.

Mrmentortv11 karma

Then go watch it you will get a good laugh out of it it's called " gallon smashing prank original"

Speedygonzales211 karma

thanks

redvining-7 karma

spinal bifida

;)

Speedygonzales213 karma

Nope, no l :P