Almost two years ago I shared a little bit about my condition with you guys, and now I am back again for those who might be new and so on. Here's the old AMA

My name is Dani, I am now 20 years old. I was born with a deformity on my hips, legs, and left hand. The condition on my lower body is know as Bilateral femoral focal deficiency (PFFD.) Since that last AMA, I realized that not many of the people in the world who have this condition have it as...well, as bad as I do lmao. My case is unique since both legs and majority of my hips are affected, and I also have no knees!!. On some people who are born with this, it only affects one leg and it is usually amputated.

Aside from my physical condition, I am a quite a shy, reserved person. I love swimming, YouTube, drinking coffee, and talking about life. My favorite TV show in the past few months was Game of Thrones - absolutely loved it. Some of my favourite Youtubers include people like Philip DeFranco, Cr1tikal (penguinz0), AndreasChoice, and so many more!

I feel that making this AMA is a good thing. People can learn from it and ask their burning questions under the anonymity of their account.

Hey , I am back now and will continue with the AMA :)

Proof 1 - Proof 2

Someone asked me if I could write my username with my left hand, since I only have 3 fingers. So here it is . The top is written with my right hand, and the bottom with the left. HERE is what the original question was

Well guys, this was fun thank you for all your questions.

Thank you for participating in this AMA.

Comments: 270 • Responses: 56  • Date: 

DoctorKynes85 karma

Hi, I'm a Rehab doctor who treats a lot of people with limb loss. What have your doctors done that you've found particularly helpful? What do you think they could do better to help you?

wheelchairmaster15 karma

Hey, I'm not sure if I already answered this? But anyway. The thing is that I stopped seeing doctors for my physical condition when I was around 17 years old since there's not much that can or should be done.

Not really related to my legs but swimming greatly helps with my back pain. I've been meaning to go see a physiotherapist for my back pain, but currently I don't have the $$ and I don't want to bother my fam with that. Also, lots of stretching in the mornings helps too. But I guess the swimming does exercise my lower body a little bit as well.

Thanks for reading, doc!

Ribbonz356 karma

Hello, what are some advantages about being in a wheelchair that most people wouldn't think of?

wheelchairmaster282 karma

Oh you know, getting in the front of the line at Disneyland and stuff 😎

Except I've never been to Disneyland so it really does sucks to be me, I guess.

Raargh22 karma

This is a good one. I'm writing from the perspective of a manual (self push) wheelchair, as electric chairs are very different. Also not OP.

  • Assuming you have or can build good upper body strength, the first one is speed! I can 'run' for a bus so much faster than anyone else. It's hard to get up a hill, but you can scream down the other side as long as you have good control. And if you get really tired, someone will be happy to give you a push. No-one will pick you up and carry you if you get tired walking!

  • Always getting a comfortable seat. A full time wheelchair user will normally have a setup like OP and I (presuming they can afford it) with an active user chair made to fit them and a supportive cushion. Never sit on a stinky train seat or hard wooden bench again!

  • Skate parks. No skateboard? No problem! Wear a helmet, mouth guard and pads though. Everyone should wear these but in a chair, you won't put your hands out to save yourself, so you're going to land on your knees, elbows...or chin. I like having teeth.

  • You can decorate your chair and look fucking awesome. I normally have monkeylights on my wheels and small headlights on the front. I also decorate it for the seasons, cobwebs and bats for Halloween, tinsel and fairylights for Christmas, you get the idea.

  • When drunk, you're never going to fall on your arse.

  • People love going shopping with you, as there's normally a larger changing room for chairs and if you're a good friend, I'll let you dump stuff on my lap in exchange for a push. Similarly you will often get to skip the normal lines with friends if the main entrance is not wheelie accessible, as the people who run these things don't tend to make you go in alone which is really nice of them.

  • My chair has a pocket on the back and underneath to hide all my shit in. No need to carry a bag or stuff your clothes pockets, hide it all in my wheels!

wheelchairmaster6 karma

My chair doesn't have a pocket on the back. Now I want a pocket dammit.

stufoor37 karma

I shattered my left tibia three months ago and I'm probably going to be in my wheelchair for another two. What do you use to stop your back and butt from becoming a sweaty mess? Seriously. Summer in Texas is giving my whole back-side swamp ass.

wheelchairmaster10 karma

u/Raargh answered this better than I could have. I live in Canada where summers are short and not that hot to be honest, so I wasn't really sure how to answer your question.

Good luck ! hope you feel better soon :)

VivaTequila31 karma

I have an anecdote and a follow up question.

Recently I was on break at work and went to get some food. On my way back, I was walking down the street, absorbed in my phone. Now the standard thing I do and I'm sure a lot of other people do is just to maintain spatial awareness - don't wanna run into cars or anything. Wherever there's movement caught in the periphery of my vision, I'll look up to make sure I'm not gonna hit anything. As I was walking, the presence of a nearby person who used a wheelchair with her friend going up a hill caused me to glance up. This person has some physical irregularities that I can't really put my finger on, but anyway, I walked past her and in exactly the same flippant way that I didn't pay attention to anyone else, I looked at her and made eye contact, and then strolled past her looking at my phone again.

When I walk past able bodied people and make eye contact normally I think nothing of it. When I walk past a person who has a disability or anyone who looks peculiar, odd, or unusual, the natural instinct is just to observe a little more closely out of idle curiosity.

When looked down at my phone again, I was cursing myself for not just smiling warmly at the girl - it made me feel like all I had done is acknowledged her disability and walked on my smug, able-bodied way.

I feel like I should have just smiled, but then I wouldn't smile at anyone else on the street for no good reason - so why would I smile at a person with a disability? I feel like it might compensate for the fact that idle curiosity leads to "staring" or making eye contact, and then there's an awkwardness that follows.

How do you feel to be on the receiving end of that and is there anything I can do better?

wheelchairmaster8 karma

I'm very used to being started at whenever I go out, it really isn't anything new. Honestly, I understand that people are curious of someone that clearly stands out, and are inclined to look, even for just a brief moment. And that's fine man, just don't stare for too long. I can not tell everyone to stop staring, because that's impossible. Someone will always stare. I'm okay with it at this point.

ShutUpSmock25 karma

Has it been hard to find a significant other that accepts you for you?

wheelchairmaster4 karma

So far I've been in 2 relationships, but nothing serious since I'm still young. At the moment I don't want a relationship, I am just not good at relationships, not even because of the wheelchair, that's just me lmao.

JNTLmeow23 karma

Do you use the 'wheelchair'/family bathroom? Are they hard to use for you, and do you have any suggestions for how they could be improved?

wheelchairmaster49 karma

I think that as long as they are roomy and the door is wide enough, it'll be fine. I've encountered some places where the door was just too narrow to the point where I couldn't even get in.

Personally, I have a very strong upper body and I can get off my wheelchair with no problem, and go into the bathroom . But I know there are other people who can't do that and it makes me feel a bit worried about them. I don't know what I would do if I wasn't able to get off my wheelchair.

Melbmeets23 karma

How do you stay in shape? Also do you eat less than say your friends?

I am in a bit of a diet mode here and counting calories and thus the questions. My excuse is that I sit around all day in an office but now you just made me see I am lazy.

wheelchairmaster3 karma

I do eat smaller portions of food since I do not exercise everyday, but it also helps that I have a higher metabolism.

captj211321 karma

Last AMA you had plans to be a lawyer, how are those plans progressing? If not a lawyer, what are you working towards right now? Good luck!

wheelchairmaster15 karma

Not as I planned :)

I'm super broke at the moment and actually considered starting a GoFundMe thing, but it just feels odd to ask for donations, like I don't know man. I'm still looking for a job, but it's kinda difficult for someone in a wheelchair with no college education. Being completely honest, I'm not too sure what I'm gonna do anymore.

ziburinis6 karma

Are you in the US? Vocational rehab might help out with tuition, and they can definitely get a plan going for you to go to school and help support you with that. It's called Dept of Health and Human Services or something like that. You can PM me your state and I can help find the right department. Mine paid for various adaptive equipment and other things.

wheelchairmaster4 karma

I don't live in the US, I'm in Canada. There's some things I'm looking into but since I am a sponsored immigrant I'm not eligible for some of those things. beh. If I start school next year I'll be applying for student loans, I think.

But thanks anyway, I really do appreciate it! :)

Chief_Economist19 karma

How has your disability gotten in the way of playing Pokemon go?

wheelchairmaster8 karma

The only thing that's gotten in my way is the fact that is hasn't been released in Canada. I'm constantly checking for it, but it has all in in vain.

SgtIcetea4 karma

It's out btw xD

wheelchairmaster2 karma

Please don't play with my emotions, I can't see it yet on the play store.

SgtIcetea2 karma

I just saw it on twitter let me get a link for you^

Here you go, might take the playstore a few mins: https://twitter.com/PokemonGoApp/status/754756895584509952

wheelchairmaster4 karma

( ͡ᵔ ͜ʖ ͡ᵔ )

Thank YOU. You deserve every single good thing that comes your way.

ROUNDBOMB3R18 karma

What's it like having no knees and such? And does it affect your social life greatly?

wheelchairmaster104 karma

Damn, well, the thing is, I don't really know any different, know what I mean? I can't describe something I've never had, to me it feel perfectly normal though. Isn't that such a weird thing?

Anyway, it only impairs my social life when my friends want to go hiking and they forget I can't actually walk lmao. Sincerely, they do forget about the fact that I can't do some things, since they're just so used to me.

Hope that kinda answers your question.

IAmDaBadMan24 karma

If there was a backpack or harness of some sort that you could piggyback with someone on a hike, would you be down with that?

wheelchairmaster3 karma

I mean, sure why not

ROUNDBOMB3R9 karma

Will you ever be able to live on your own atleast...? And are you truly the wheelchair master? Because not only can I pop a cap in your ass, I can pop a sick wheelie on someone's wheelchair :)

wheelchairmaster31 karma

You betcha, son.

Thriven10 karma

Anyone ever say you look like Olivia Munn?

wheelchairmaster5 karma

That's a first! :)

thisisntasafespace10 karma

Can you do a wheelie in your wheelchair, /u/wheelchairmaster?

wheelchairmaster6 karma

Only small ones from now on, since I got a concussion a few years ago now.

Not fun.

Amirax2 karma

Was the concussion wheelie related..?

wheelchairmaster2 karma

Yes, kind of.

One of my dear friends was chasing me to tickle me or something of that sort, and I did a wheelie by accident whilst trying to escape. I remember laying on the floor and the look of concern on my friend's face, which was followed by laughter whilst saying "I'm so sorry!"

I had to go to the doc afterwards. Fun times.

CorpseFuckerShitLord7 karma

Hello Dani,

At this stage in your career it is evident that you've mastered the wheelchair. My question to you is, do you have plans or have you already been working on mastering something else?

wheelchairmaster6 karma

I really want to become a better swimmer, and maybe start painting/drawing more.

:)

wheelchair_boxing3 karma

How about mastering boxing?

wheelchairmaster2 karma

That'd be pretty cool too.

gnexuser24246 karma

Do you have a cat?

wheelchairmaster1 karma

I used to :) Had to give her away.

gnexuser24242 karma

aww that sucks :( why?

wheelchairmaster3 karma

I moved to another house and the landlord didn't accept pets :(

matiasdude5 karma

I just wanna tell you how beautiful you are. The first proof pic not showing anything of your face or body made me think that you try to hide because you're self conscious of your appearance, but then I opened the second picture and was like, 'dang'!

Tl;dr no question, just you're gorgeous.

Edit: okay one question: Have you ever sent head shots to a modeling agency. You look like Tia Carrere.

wheelchairmaster4 karma

Aw thank you so much! On my Instagram I usually post some head shots and I was once contacted by a local photographer to do some work with him. I declined though, I'd love to do it but it kinda intimidates me.

matiasdude2 karma

It can definitely be intimidating, but you've got it in spades. I think you could at least have a nice side income there if you wanted it.

wheelchairmaster2 karma

Thanks! I might look into it :) Here's my Instagram if anyone wants to leave me any suggestions on how I could make it better

https://www.instagram.com/dany_mascara/

lcbocan5 karma

What's it like being super hot?

wheelchairmaster3 karma

Aww, stahp it you (•ω•)

GavrielBA5 karma

I don't know if I'm too late but I always want to ask this question as a parkour coach: what would possibly inspire you to take on parkour training? Testimonies from other people in similar situation who are already doing it? Anything else?

wheelchairmaster3 karma

If I could I'd definitely do it. One of my cousins is really into it and whenever I visited he'd help me go on the monkey bars just to exercise with him. I think I'd mostly just do it to get a fit and for the adrenaline rush, of course.

nickelb20004 karma

Whats it like swimming with no knees?

wheelchairmaster1 karma

To me it's pretty normal as I don't know any different or what it would be like to have knees. I just use my upper body to swim, it's a great exercise.

nesrovlahb3 karma

Thanks for doing this AMA. You mentioned that they (your friends) do forget about the fact that I can't do some things, since they're just so used to me. Do you ever forget?

wheelchairmaster2 karma

Oh no, never. I always have in mind if I'm able to go to certain places and worry about stairs and stuff. I'm naturally a paranoid/neurotic person, so that doesn't help much.

flightofangels3 karma

Hey I'm happy to see you have fun with the AMA. I'm a deformed girl too with amniotic band syndrome so seeing deformed on reddit always makes my day! Do you ever experience overwhelming despair knowing that there will never be anyone who looks just like you on TV? How do you deal with it hahaha, I don't know how

wheelchairmaster1 karma

I daydream about being in movies all the time lmao. I was going to go for the Revenant casting since they were looking for people in wheelchairs and that sort of stuff. I didn't and regret it every single day.

Well, for one I don't really mind, I don't make a big deal about it. I just go on with life, y'know :)

netuoso3 karma

How is sex?

wheelchairmaster3 karma

Pretty good

Naggins3 karma

What do you think of the term "difference" instead of deformity?

wheelchairmaster2 karma

I'm okay with both really. I'm just more blunt when it comes to terms, I guess.

pjplatypus3 karma

How often do you say "I'm on a roll"?

wheelchairmaster6 karma

Not often, but thanks for the idea ( ͡° ͜ʖ ͡°)

-Tukani-2 karma

If you were in the body of a normal person for only 24h, what would you spend your time on?

wheelchairmaster2 karma

I'd choose any super rich celebrity and transfer a bunch of money to my bank account. They're super rich so I don't think it would affect them at all that much 😂

I guess I'd also donate a bunch of that money too, and drive around in expensive cars. Then I'd just sleep for the rest of the day.

Landsfaderen2 karma

How do you feel about non handicapped people using handicap restrooms?

wheelchairmaster4 karma

Well, if you really are shitting yourself go ahead, but don't leave it all messy, das nasty.

anonywriter992 karma

Would you be insulted if someone knelt to be on eye level when speaking with you? I've always wondered this, because I think it's rude to think someone must always look up at you. Can't be good for your neck.

wheelchairmaster1 karma

Oh, of course not! Personally, I like it better because then I can hear what they're saying better. But then again, some people in my family are really tall and I guess I am kinda used to looking up to tall people? Not too sure how to explain it haha, hope it made sense :p

nonomnismoriar442 karma

What things can our society do to make life easier for people with restricted mobility?

wheelchairmaster3 karma

Just to have more access to places, such as ramps, elevators an so on.

This is important not only for wheelchair users, but also for the elderly people who cannot move like they used to, and so on.

Twokindsofpeople2 karma

Are you excited for the new season of bojack horseman?

wheelchairmaster3 karma

I must be living under a rock since I've never heard of it.

Plz don't kill me

Twokindsofpeople2 karma

I'm sorely disappointed in you wheelchair master. Go binge on the first two season on Netflix. Idgaf if you have "school" or "work" or whatever other useless wastes of time you have. Priorities.

wheelchairmaster2 karma

Will do for sure ◔ ⌣ ◔

Twokindsofpeople2 karma

So how do you like the first few episodes of bojack horseman?

wheelchairmaster2 karma

I'm about to start watching season one. Thanks for recommending this, I've been looking for something to watch that wasn't too serious or boring.

DieSchadenfreude2 karma

What are your feelings toward/about people who say they would rather do anything than be in a wheelchair? My father in law is in a position where he may be paralyzed at some point and seems to think anything is better than that (to the point of killing himself). It personally annoys me to no end because he can't function as is, and hasn't been able to for about 15 years because of extreme chronic pain. He loves hiking, and as I've been athletic my whole life I can relate. It would suck having a huge change to your life, I understand that, but I don't feel like it's something I personally couldn't get used to. Plus, there would be swimming. I was so immobile with the first baby I had I switched to swimming for exercise. It's a great alternative. I find his attitude not only disrespectful to those who are in wheelchairs, but also stubborn and needlessly negative. What are your feelings?

wheelchairmaster8 karma

It does get to me when people say those sort of things, but we have to understand everyone has different point of views for that matter.

I was born with this, this is all I know and I cannot compare it to anything else. For me, this is just fine. But I cannot imagine what it would be to be someone who is perfectly fine (able to walk) and then one day, lose that ability and maybe more.

I've thought to myself that if I were to get worse, I wouldn't be so sure I'd be happy anymore. Like in the recent movie Me before you , (SPOILER ALERT) the guy who was paralyzed chose to have assisted suicide. So many people I talked to though it was selfish for him to leave his loved ones, but I though differently. I felt it was okay, and I was sad, sad beyond words... but it was okay, you know? He just didn't want to be in pain any more - Not just physical pain, but also emotional pain. Choices made by people who live like this should be respected.

Of course, I am not speaking for everyone who was a physical disability, this is just my opinion.

The_Withheld_Name2 karma

Did you see that BBC ad for the Paralympics? My sister has some cerebral palsy & this topic seems hit me pretty hard... you know, when you really know someone it feels more personal of course. So... what are you into going forward? Do have career ideas? I'm struggling with that myself.

wheelchairmaster1 karma

I haven't been keeping up with the Paralympics to be honest. Career wise I haven't been able to focus on what I want to do, as I need to upgrade one high school course to start Uni next year. I'm broke at the moment though, I'm going to probably have to put that on hold. Really suck, but that's just life.

Sycab2 karma

What would make you feel a lot more comfortable and better when being treated in public? (Sorry for my English)

wheelchairmaster4 karma

Hi! :)

Really all I want is for people to not be so obvious when they stare. Especially women. Often I get the "Oh gross" from younger girls who are around my age. I mean, I don't really care anymore since I am used to it, but sometimes it is just waaay too obvious that I'm being stared at.

This is just my personal experience and it may be different for other people, I am not speaking for everyone out there with a physical disability.

Qari2 karma

It's pretty clear you stay in good shape. What's your workout routine?

wheelchairmaster2 karma

I don't have a workout routine at the moment. I do go swimming and do weights sometimes but it isn't an everyday thing.

For me it's mostly about diet. I try to eat smaller portions of everything so I don't gain too much weight. I am very short so being overweight would not be a good thing. Also, apparently I have quite a high metabolism and it is easier for me to stay on the right weight.

BeefSamples2 karma

Could the deformity be corrected at all? like could you get a bilateral hip replacement to sort the hip, limb lengthening and get artificial knees installed to make your legs functional? It sounds insane as i type it, i'm just wondering how far science could go to help you.

wheelchairmaster3 karma

I think I stopped seeing doctors for my physical condition when I was around 17. At the moment there is nothing that can be done about it.

Through ages 4-6 I used a prosthetic leg on my right leg since it is about 3 inches shorter than the left one. I think I mainly stopped using it because it started feeling too heavy. At the moment I'm happy with the wheelchair, though if something better comes out in the future, I won't hesitate to give it a try :)

ljrochon2 karma

What are your thoughts on Apple Watch and the watchOS 3 wheelchair features?

wheelchairmaster2 karma

I'm not really into apple products, I mean I do't hate them but I'm just not. I mean, if I was gifted an apple product I'd use it of course, but I wouldn't necessarily buy it myself. And I'm also broke at the moment so there's that lmao.

That being said, I haven't heard about that! I'll look it up and check it out though :)

SpeedyVT2 karma

Do you play Pokemon Go? If so how much do you enjoy it?

wheelchairmaster3 karma

I've been constantly checking for the for app to come out here in Canada, but it hasn't </3

I am pumped about it though!

Dog3Way1 karma

Weed: do you partake?

wheelchairmaster4 karma

I jokingly talk about doing it for my back pain, you know, to chillax and stuff.

But at the moment, no.

akichandoug1 karma

What would you tell to somebody that is having a rough time accepting their deformity? I also wanna say god damn you are hotttttt 😉

wheelchairmaster1 karma

Well, I didn't want to just say "You'll get used to it" Because it doesn't really work that way. Honestly, they just have to perceive and accept it, and of course surround themselves with people whom they trust, no negative people please lmao :)

idrissrocks1 karma

Bit of a strange question, but could you try writing your username with your left hand? I'm just curious about what that would look like haha. Also, I'm sure you get this a lot, but you're really pretty.

wheelchairmaster1 karma

Thanks,! I will for sure try and post it later on the description of the AMA.

Also, fun fact : I was supposed to be left handed but I'm one unlucky bastard and had to use the right hand for the rest of my life. I struggle to much with my right hand, it's not even funny. And of course I can't really use the left one because the middle finger does not bend.

Blistor94-14 karma

do you sex?

wheelchairmaster3 karma

Only for free pizza