My short bio: I'm from Israel. My name is Jordan. I was diagnosed with SMA type 2 when I was 2 y/o. Average level of English.

My Proof: https://scontent.fsdv1-1.fna.fbcdn.net/hphotos-xpa1/v/t1.0-9/936720_4550621862920_171122350_n.jpg?oh=aa66b954ec715a55136b1f1429d413e1&oe=57BEFC4E <- this is me

more proof: http://s23.postimg.org/qs6197e63/0cc62a84_cd02_422f_9f38_9aef743d0ba2.jpg

Comments: 235 • Responses: 62  • Date: 

a_frayn211 karma

Jordan, do you ever wheel down to the Jordan river so you can be Jordan in the Jordan?

Hrsi88130 karma

Ahh, yes?

dfwlawguy75 karma

Hey Jordan I know you like jordens so I got you some Jordans to wear so you can be Jordan in your Jordans in the Jordan

Hrsi888 karma

Thanks?

afarina197 karma

Do you prefer to be treated as just another person or would you rather people feel bad for you and try to help you?

Hrsi88106 karma

It all depends on the situation. If I'm playing chess, I want my opponent to try and win. If I'm meeting with friends I would like them to hang out at an accessible place. Generally, treat me just like you would treat the next guy. In cases I'm at a disadvantage, all I ask for is equal opportunity. If you don't know whether to help someone, just ask if they need help.

EDIT: Redditors, please upvote this guy's question, it's an important one.

heechum8 karma

Is there no middle ground?

afarina18 karma

Perhaps but I know I personally see people with disabilities and am torn on how much help I should give as I know some get offended if you offer to much.

Hrsi8835 karma

Always offer. I almost say 'no, thanks' every time, but, rarely. I do need help.

hopelesswanderer2166 karma

What kind of engineer will you become?

Hrsi88101 karma

LOL, how did you know? Next year I'm going to study computer engineering in college.

hattttt4 karma

Technion? Haifa is a pretty nice city too

Hrsi884 karma

Haifa is mountainous, so it's not very wheelchair-friendly. I'm going to Ruppin Academic Center.

hopelesswanderer21-63 karma

I just guessed because the God of Israel blessed the jews with a lot of knowledge, and there are more engineers in Israel than a ton of other countries and places. Also good luck, im in the US and will go to college within the next 3 months.

Hrsi8834 karma

Good luck to you too!

Spider-man1343 karma

What is the hardest thing you struggle with because your in a wheelchair?

Hrsi88159 karma

Not being able to be the one to start an action. I'm not gonna hug or kiss anyone if I won't explicitly say I'd like a hug or a kiss, and that just ruins the moment.

micahleo37 karma

Thanks for doing this AMA!

How has your SMA affected your school/social life?

Has school been a challenge for you, or are there good accommodations and supportive teachers?

Also, it is average, not avarage.

Hrsi8863 karma

How has your SMA affected your school/social life?

With the amazing support of my parents I have been in normal schools my entire life. Relatively, I'm very independent. This quality allows me to be able to develop good relationships with those who surround me. However, I notice differences between me and my friends. Most of them have girlfriends and already had sex. I haven't kissed anyone. Ignoring the little things (like the example), I manage very well socially.

Has school been a challenge for you, or are there good accommodations and supportive teachers?

Grade-wise, my status is exceptionally good. My parents always researched every institute I went to. Therefore, the schools I went to have been accessible. My current school has one accessible classroom, all the classes I take are there. The school is cooperative in that aspect. The aforementioned classroom was made accessible when I enrolled, for me. During school hours I have an assistant that tends to my needs (feeding, re-positioning, copying off the board etc.)

blankpicture17 karma

Just my two cents. I'm fairly good looking and with no disabilities, and I've not had a single intimate moment with a girl. Not even a kiss. In my life I've received around 3 hugs and I'm almost 24. So don't worry! I don't believe it has that much to do with your disability! Just stay strong, it will come and when it does, it will be all the more sweeter!

THRlLLH020 karma

I don't believe it has that much to do with your disability!

I know you're just trying to be nice but c'mon. I'm a 26 yr old quad, I wasn't some player that had girls chasing him but I slept with 7 girls before being paralysed at 17, haven't kissed a girl since. It has everything to do with being disabled.

blankpicture1 karma

Yeah, perhaps you are right. It is hard to put yourself in other shoes when it comes to this. For me.. it wouldn't affect my attraction to a person, but not everyòne is the same. If you don't mind me asking, how are you dealing with it?

THRlLLH02 karma

Like OP said you just try to ignore it. You have good days and bad.

Hrsi882 karma

Agreed.

naf8836 karma

How is the health care in your country? Do you feel that all of your needs are addressed and accomodated adequately?

Hrsi8860 karma

How is the health care in your country?

I'm 17. Mainly, my parents speak with the health care people.

Do you feel that all of your needs are addressed and accommodated adequately?

Yes, I have a wheelchair, In/Exhale machine and a caregiver.

blackbonez130 karma

Hi Jordan.

Im also wheelchair bound. You also remind me alot of a friend I had growing up.

My question is, on your rough days, what do you do to take your mind off of things?

For me it's videogames. Its a nice feeling being able to get out of my own body if you know what I mean.

Have a nice day/night.(I'm bad at timezones..)

Hrsi8816 karma

Mainly, I watch movies/TV. I also found getting drunk is a nice escape from reality.

BlameItOnKilly3 karma

What's your poison of choice?

Hrsi887 karma

Beer/Rum and Coke/Vodka with juice.

WorthlessPainJunkie19 karma

Who was that on the bed behind you in that picture?

Hrsi8833 karma

This picture was taken during a field trip, and, behind me is my good friend Ofir.

Chiefs198817 karma

Does it bother you knowing you'll never be able to have sexual intercourse or is it not a big deal?

CharlesButtlet14 karma

I'm not OP but I have Spinal Spinal Muscular Atrophy type 2 as well and our disease doesn't prevent us from having sex at all. I've been sexually active since I was 18 with multiple partners.

Hrsi887 karma

Amazing. How does that work, specifically? Also, how did you end up in those situations? The more you write, the better.

CharlesButtlet8 karma

I think it goes without saying our disability doesn't Define who we are as people, or for that matter a significant other. Yes, relationships will have to work a little bit more different than others, but it is nothing if you find somebody that genuinely cares about who you are. So far I have found three people that were able to see past my disability and love who I was as a human being enough to date me. And don't get me wrong I have the exact same fears and insecurities as you.

I know that I'm not the most masculine person, I'm not really going to be able to provide a lot of financial support, hell, I can't even lean in to make the first move like you said.

But I am able to provide something that a lot of people are searching for. Having a genuine connection with somebody on a level where you feel comfortable to feel vulnerable and open yourself up to can be a rare thing. Relationships that are solely based off of a physical connection or attraction will never last. A relationship where you fall in love with somebody for who they are as a person and their mind can stand the test of time. You would be surprised what people will do for somebody that they love. The one thing that I am proud of is that even though the last three relationships I have been in haven't worked out all of my ex's will still tell you that I was the greatest guy that they ever dated and none of us ended on really bad terms.

You just have to know your weaknesses and your strengths and own all of them as a whole. None of us are perfect, but we all have something good to provide someone. I think it is also important to note that I don't believe in relationships being who halfs coming together to make one whole. I feel like a good healthy relationship is when two strong independent people can find comfort in one another and enjoy one another's company and will help make that other person even better than they already are.

But as far as the physical intimacy goes, the other person does that to do majority of the work but that doesn't mean that it can't be something that you both enjoy.

Hrsi889 karma

Thank you.

CharlesButtlet7 karma

I know it isn't easy and even I have my insecurities and doubts, but just remember that any of those negative feelings are just false projections and they're not true. When it boils right down to it we are people and we deserve to be treated as such in any given situation.

Hrsi883 karma

Have you tried going to a hooker? If so, what was the experience like?

Hrsi8810 karma

That's what hurts the most. It's true I can't have sex like everyone else. However, technically I can, the girl would be doing all the work, but I can.

NuclearCorpus16 karma

Where did you get that shirt? I kind of want it.

dudecephus14 karma

When they see you rollin', are they hatin'?

Hrsi8812 karma

For sure.

McFlare9214 karma

What level of function do you have in your arms? Is your condition getting progressively worse or staying relatively stable?

Hrsi885 karma

I can't lift my arms. I have a radius of movement of about 20cm from my wheelchair controller with my right hand (I don't use my left hand). This allows me to reach just my phone and a computer's mouse. I'm writing this using Comfort On-Screen Keyboard. My condition is getting worse, but extremely slowly.

The_Red_Paw12 karma

I know I'm late to the party, but what is the fastest you've ever gone in your chair?

Hrsi888 karma

12 km/h

neuroglias12 karma

How do you cope with the fact that there are some things (like a running marathon) that you just can't do? I ask not to point out your difference but because we all have to cope with this on some level.

We're you, or will you be, required to join the military? My cousin is in a special group for people with autism so I suspect you will still serve in a unique way?

Hrsi8863 karma

You are implying I found a way to cope with those things. I haven't. The best thing to do when you dive into dark thoughts is to ignore them and go do the things you can do that make you happy (at least it's what I do). I just watch a movie or something. (For those of you who don't know, in Israel, when you turn 18, you go to serve in the army for 3 years [2 for girls]. It is uncommon not to join the military). As soon as I needed to begin the enrollment process for the military, they sent me a letter that basically said I'm not required to join, because of medical reasons. I went there to try and volunteer. I scored the highest scores in the exams. Eventually, I got rejected because they didn't want me to be on a base with my caregiver.

Kpopllama7 karma

  1. Do you need help getting dressed?
  2. Have you ever been depressed with your condition?
  3. How do you use the bathroom?
  4. How does sex work for you?

Hrsi887 karma

  1. Yes, my caregiver dresses me.
  2. Yes, it comes and goes. It didn't disturb me when I was a kid, but now I see a lot of things I can't do (military, masturbation, driving, drinking with friends [got to pee, which means being around my caregiver. You can't really have fun with friends with someone watching over you).
  3. I stay in my chair, pee into a bottle then my care giver pours it into the toilet. To poop, my caregiver lifts me to the toilet, there, I can sit on my own.
  4. I'm 17 so I don't know, yet. I assume I'll lie on my back and the girl will do all the work (cowgirl position).

LTPLoz3r7 karma

Do you have any siblings? What kind of hobbies do you enjoy? You said you watch movies?! What kind of movie do you like? Do you travel? If so where have you been and what's your favorite place?

Hrsi882 karma

  1. 3 sisters.
  2. Watching movies and TV.
  3. Yes.
  4. Everything beside horror.
  5. I do.
  6. Usually, I travel with my family. I have been in a lot of places: France, Italy, New Zealand, USA, Canada, Poland and many others. My favorite place is New York.

LTPLoz3r2 karma

Are you the oldest of your Siblings? What was your favorite thing about New York?

Hrsi883 karma

  1. Yes.
  2. The sense of life the city has, the opportunities it presents and the food.

UlfricRainCoat7 karma

How do you stay so fit?

Hrsi8838 karma

I don't. Because of my illness, my muscles are weak. Therefore, I swallow slowly when eating. This causes me to eat slowly. Subsequently, I get full fast. So, I don't eat a lot.

truthaboutcs7 karma

What do you think about the movie Predator?

Hrsi881 karma

Haven't watched it. Do you recommend watching it?

Kadour_Z7 karma

Whats the most intresting thing about you that has nothing to do with being on a wheelchair?

Hrsi888 karma

I consider myself funny & witty. I have a true passion towards movies. I'm generally a nice person to have a conversation with.

Kadour_Z2 karma

Whats your favorite movie?

Hrsi884 karma

SO MANY GOOD MOVIES. Here's my rating list on IMDb.

UNR3AL207 karma

I recently had to do an assignment for a class where we had to spend a day in a wheelchair. And boy was it eye opening!! Simple tasks were suddenly a struggle for me and not being able to do some things myself. Mad respect to you and good luck on your life and dreams!

Do you ever hope that medicine will advance far enough to the point where you will be able to walk again?

Hrsi885 karma

I wish for it everyday. I don't think it will be available in my lifetime, though. One must know that even if I'm cured, there are a lot of problems that come from SMA II. I have Scoliosis, my lungs have been affected and I haven't used my legs in 16 years so I doubt they would work.

Beacon_of_Blue5 karma

I'm late to the party but will still ask. Any favorite video games or comic books/movies?

Hrsi883 karma

I can't now, but when I could, Call of Duty was my favorite one. SO MANY GOOD MOVIES. Here's my rating list on IMDb.

rizefall4 karma

What do you mean with "Can't now"? Can't you play video games or watch movies? and if so, why?

Hrsi886 karma

I can't play video games. My mobility range has worsen over the years.

Boonaki3 karma

Ever get any cool nicknames?

Hrsi886 karma

My wheelchair's company is called Permobil. My friend once stylized it as Spermobil, but that's it.

ChilledButter133 karma

what's your favorite dessert? do you like chocolates?

Hrsi883 karma

Crème brûlée. I like chocolate, I don't LOVE it.

hellomynameisoliver3 karma

do you get boners?

Hrsi8811 karma

Yes, like any other person. I also fart.

PCP_Tornado2 karma

Jordan, I am disabled too with FSHD, another type of MD. I am wondering, if you had to leave your parents are there long term care facilities in Israel for young adults? Or you would end up in a nursing home for the old?

Hrsi885 karma

I believe there are. But I can manage living alone with my caregiver.

PCP_Tornado1 karma

And your caregiver is supplied by who? How many hours/day of care do you need? I'm just trying to work out how it works in Israel compared to here. (Quebec, Canada)

Hrsi885 karma

Basically every disabled person gets money from the government and doesn't pay taxes. With this money I pay my caregiver's salary. I need a caregiver 24/7.

How does it work in Canada?

PCP_Tornado3 karma

I need care 24/7 too. I'm on a ventilator with a tracheotomy, in a wheelchair. That's great you have enough money form the Government to pay for a caregiver. Each Provinces in Canada have their own Health social programs. In Quebec, there's a program that will give you some money to pay for a carer at home. The cap is around 40-50 hours/week at 10-12$/hours for the carer. So no way someone who needs 24/7 care like me can afford a carer and remain at home. As a result, I am in a old folks home, which totally suck. I'm working on a project to open up a facility for people like me, young adults who need around the clock care. It would be for Muscular Dystrophy and other neuromuscular diseases.

If you know of any such facilities in Israel, I'd really like to know, I'm trying to look at what is being done in other countries. Our facility would be managed entirely by the residents, it would be a very democratic and open residence. We're currently waiting on the State to give us the OK, they would finance part of the services.

Hrsi883 karma

I really have no clue about that. I hope your plan goes as planned.

kasert7782 karma

Are you a serial killer? What's that corpse behind you?

Hrsi882 karma

Just my friend sleeping.

thematabot1 karma

[deleted]

Hrsi881 karma

Damn, you got me.

thematabot1 karma

[deleted]

Hrsi881 karma

thinchode1 karma

Hi, Jordan, thanks for doing this, you're awesome!

I have a question I think you could answer well, and I hope it isn't offensive as I don't mean it to be. Well, the question is what are your views on others sympathizing or perhaps feeling sorry for others with disabilities? When I meet others with disabilities it hurts emotionally, but I've considered that perhaps they don't feel the same way I do. I have a lot of respect for you, and I'm wondering if you might feel that people might underestimate your own emotions?

I guess my question is, do you feel others might make your disability out to be more distressing than it is for you? Again, I really hope this isn't an insensitive or self-centered question, and I would value your opinion. Thank you so much, Jordan!

Hrsi883 karma

First of all, I made this AMA so you could ask me these kind of questions, to educate you.

Now, I believe my view on this topic is different from most disabled people's view. That said, I do feel sorry for myself, so I can understand other people who feel sorry for me. It might just be me, but it makes sense that a lot of sense that disabled people feel this way. I don't see my illness as a source of empowerment, I see it for what it is - a disease. I see very little pros that come from my disease and a lot of cons from it, so you can understand my view.

What I am good at is pretending that everything's fine, I have no concerns and I'm not depressed; which is not true.

somekidthatdoesthing1 karma

This is a personal question, and I'm sorry if I offend you....

But how does one wipe?

Hrsi883 karma

My caregiver does it for me.

JerryTheAnon1 karma

What's your opinion of the candidates of the 2016 US election, if you even care that is?

Hrsi885 karma

Because there is so much I don't know, I can't have a favorite candidate (I can establish an opinion once I have all the facts). Trump seems dumb, though.

peacebuster1 karma

  1. Can you play video games?

  2. Do you masturbate?

Hrsi884 karma

  1. I used to. Now, not so much.
  2. Can't.

TheNimbrod1 karma

Ever thought also doing that crazy stunts like Aaron Fotheringham?

Hrsi881 karma

I can't really move my hands and my motor wheelchair is very heavy.

Velixan1151 karma

How many languages do you speak? What do you find most interesting about English?

Hrsi883 karma

Two: Hebrew and English. English allows me to express myself in more ways than Hebrew. Also, English gives me the ability to communicate with people around the world (Reddit).

Artificial-Insanity1 karma

What's your home life like? By that, I mean, how independent are you within your home, and is your home modified to accommodate a wheelchair?

Hrsi885 karma

My parents built this place. We have only one floor and everything is accessible. If I want anything, I got a caregiver living 10m from my room.

Gogolian1 karma

Me and my fiance' recently moved to a new apartment which i intend to buy. On the "Zero" floor there is a family with few children one of which (a girl) is on a wheelchair. They seem like a really fine family (i did speak with the motheer already) It seems like a matter of time to have some chit chat with the children as well. How to aproach this to not make any faux paux?

Hrsi885 karma

Just remember: she's a normal person with thoughts like you and me. Speak to her as you would speak any other child. If you can't understand what she's saying, ask a parent to translate, don't just give up.

easy_bruh1 karma

1) Have you ever been insulted or heard bad remarks about you?

2) Do you sometimes make jokes about it? Would you consider it rude if any of your friends made a joke about your condition?

3) If a miracle cure for your condition would pop into existence, would you take it?

Hrsi883 karma

  1. Not that I recall.
  2. I do make jokes. I don't mind my friends joking around, except when it's about girls or sex (that kinda hurts).
  3. Immediately. But, I want to quote my answer to a similar question:

Do you ever hope that medicine will advance far enough to the point where you will be able to walk again?

I wish for it everyday. I don't think it will be available in my lifetime, though. One must know that even if I'm cured, there are a lot of problems that come from SMA II. I have Scoliosis, my lungs have been affected and I haven't used my legs in 16 years so I doubt they would work.

Moncole1 karma

Which city in Israel is the hardest to get around in? Some parts of Jerusalem don't seem wheelchair friendly

Hrsi882 karma

I don't really know. Tel Aviv has been pretty much wheelchair-friendly. The old city part of Jerusalem is absolutely a nightmare to get around in.

iwolfy_hertz1 karma

Hey Jorden, have you ever been a part of the Krembo Wings youth movement? If so, how was it like?

Hrsi883 karma

Never. I tried many movements but I hangout with normal people, and I don't like being in a 'special' group.

finelbell1 karma

Have you ever played wheelchair basketball?

Hrsi882 karma

No. Can't.

MasterAgent471 karma

Do you have a PS4 or any similar gaming console?

Hrsi881 karma

No. I can't use a controller.

MasterAgent471 karma

:(

What do you want to become? (career)

Hrsi883 karma

Computer engineer

KamranMackey1 karma

That sucks :( why can't you use a controller?

Hrsi883 karma

Because of my disease, I can't lift my hands and my mobility is very limited. Not enough to use a controller.

KamranMackey2 karma

Ah, I understand. Sucks that you can't lift your hands.

Hrsi883 karma

Agreed.

graphicrhyme-1 karma

How do you shit?

Hrsi886 karma

Already answered.

To poop, my caregiver lifts me to the toilet, there, I can sit on my own.

DirtyPerrier-4 karma

how do you fuck?

Hrsi882 karma

Still a virgin. I believe when it happens, it'll be cowgirl style.

5162753648-16 karma

How does your ass feel?

Hrsi881 karma

Normal.