IAmA 22 year old disabled woman who uses an eyegaze system to speak. AMA.

I'm an aide at a primary school where a boy with severe cerebral palsy goes (I'm not his aide). He's 8, can't walk, talk, eat or use his arms and has been using one of these for about a year. It takes a while to answer the teachers questions but he's in a year/class with normal kids. Everyone is really patient and I love having conversations with him. This is in sweden.

i am happy you give him the time to speak and that he has the opportunity to speak so young. i am excited to hear from sweden, i am in USA

Sorry to ask such a personal question;

But what are/ have your experiences with romantic relationships been like? Are they possible at present? & What difficulties have you encountered so far?

Thanks for doing this AMA!

i guess they could be possible, and i would like to have a romantic relationship someday but i do not know if i will.

besides my grandpa owns guns and i don't want to be responsible for a poor guys death :-)

So, if I am understanding, it tracks what you're looking at and uses that as a mouse?

What happens when you're using the computer and you get distracted or something like that? Does it account for you looking "off screen" or does it mess things up?

What happens if you go cross-eyed?

yes it is like my eyes are the mouse.

when i look away it is supposed to pause. it does not always pause. it catches a sparkle from my hearing aid or patterns on my shirt sometimes when i look away. also if my aide does not calibrate it right it can think i am looking off when i am looking at an icon.

i have not tried to cross my eyes :-)

How did you become disabled? I assume you werent born that way because you have only been using your system for 6 months. Im sure its had a huge impact on your life, so what were some of the biggest changes you experienced?

i have been disabled my whole life, however as I get older I am less and less able to use my body. i have cerebral palsy and as a child i could use some sign language and eventually another device with a touch screen, but i was unable to use it well by 16 and it broke when i was 20. i have been without means to communicate beyond yes/no since. it took a very long time to get my current device because it is extremely expensive.

Expensive!?? Oh god I could make one of these. It wouldn't be great, but with a nice webcam I could use some image recognition libraries out there and code this. I'm reasonably sure.

(im looking at OpenCV. I'm gonna undercut the shit out of these manufacturers >:))

yes. 8000 for the computer 7500 for the tracking add on. i do not think you could make one worth using but i would love to see you prove me wrong and help someone who cannot afford one. :-)

Did you go to mainstream schools growing up?

I remember when I learned what cerebral palsy was (when I was 18!!). I was immediately furious because I felt like society had tricked me into thinking these people were mentally retarded when, fuck, they're just as smart as me if not smarter.

I have been harassed by devotees/people with fetishes in the past when I first began to use the internet.

Do you think you'd have a different attitude if these 'devotees' weren't creepy losers?

What is a devotee?

This is a really awesome AMA. Sorry if my questions are lame!

Edit: I changed a word to seem less ign'nt

i went to a deaf school and then a special needs school until i graduated recently. it has been difficult for me to communicate and even more difficult to do testing so scores put me in a kindergarten level class. with the help of my grandparents and aides at home i got to learn "normal" things.

Aide butting in: This chick is smarter than me and I swear to god I would have failed all my math courses without her.

a devotee is someone who wants to have sex with people with severe physical disabilities like amputations or cerebral palsy. i would have a different attitude towards them if they were interested in me and not whether or not i have leg spasms or need help in the bathroom. enough of my life revolves around my disabilities without them

How long did it take to learn how to use it

1 month for basic controls 5 months for sentences and harder controls like using the internet. i still get lost in it sometimes. i am learning.

How long does it take you to type things? Does it have word-prediction or something else, or do you have to do it letter by letter?

i can use the keyboard screen with word prediction or a map of words for simple day to day communication.

Hi there. You're an inspiration. Keep going!

I'm a Doctor from the UK. One of my patients has just had this very same system recommended to her after she was diagnosed with RSI.

If you don't mind me asking, are you suffering from post-impairment syndrome? How are your joints etc.?

More importantly, do you feel that your device puts a lot of strain on you mentally? Such as, when you're forced to concentrate for long periods of time, maybe due to in-depth conversations.

i am only just getting to fully know what is going on with my body because my doctors do not speak sign language to me and my grandma gives me watered down information. i do not know if it post impairment syndrome but i do have those symptoms. my joints give me a lot of trouble but i do stretches 3 times a day and that helps a lot. my hips are the worst though !

my communication device can be draining over time and very frustrating. my replies have been spaced out because of this. i do appreciate talking to everyone through!

That's inexcusable from a medical perspective. We have on-site signers that we can rely on in certain situations.

I'm glad things are looking up, so to speak. Keep going. I can imagine it is very draining to communicate in that manner but your brain is an amazing piece of anatomy, and you will get used to it.

i have never been to a doctor who had an interpreter available. i wish there were more like yours!

Does your Grandma think that you have limited cognitive funtioning? She should take the time to talk to you that you deserve.

no she does not, she has been my greatest advocate. she does not sign well and i think she just does not want to worry me.

How long did it take to "type" this?

around 20 minutes with help from my aide.

Do you still have to concentrate to keep your eyes on the same field? I would immediately look somewhere else upon realizing what I'm doing. How long do you have to be fixated on a button?

Aide here. It only takes 1.5 seconds to activate the button. She is familiar enough with the pages that she doesn't need to linger to figure out which one she wants to push.

What are your hobbies/what do you do in your free time?

What's your favorite music?

i like to watch tv, read manga, go to the movies, and go to the lake. i like to look at fashion and make up. i like to get dressed up and shop. when i have the chance i like to swim, boat, and zip line.

i am deaf, but i like to watch one direction :-)

I would like to pay for you to have a makeup consultation - i.e. somewhere that will help you choose stuff that suits you and that you like - at a place that is convenient for you, if you would like. Can this be arranged?

Sadly, I can't arrange One Direction for you :(

wow i would love that, but i feel awkward taking a strangers money. i appreciate the gesture though!

How does one go about swimming in your situation? Also, I'm glad that you get to do the things you enjoy! :)

i have a fat baby life jacket. its made for large infants to keep their head above the water. i think there are ones made for people like me, but ive had this since i was a kid. like this:

http://www.broadenedhorizons.com/media/catalog/product/cache/1/image/800x800/5e06319eda06f020e43594a9c230972d/l/j/lj-a_manikin_1_1/Adaptive-Life-Jacket-for-Disabled-(choose-size)-31.jpg

What kind of fashion do you like? Costumes, weird fashion, girly things?

My biggest hobbies is making random costume pieces and putting together crazy outfits. everything from steampunk to cosplay to just dressing like a creepy alien. I love unique and or over the top fashion and makeup.

I'm also 22 girl. I saw elsewhere people mentioned interest in being pen pals. If you are interested I would love to get to know you!

sure that would be fun ! i like glamorous and girly outfits and some comfy boho type things. ive been really into long skirts with a bandeau top recently. i like pinks and some bolder reds for makeup. i like winged eyeliner but i always smudge it because of my head array. i would love to talk more :-)

What is your best advice to people who wish to communicate with non-verbal people? I teach art to students with severe autism, many of them are non-verbal and are unable to use any form of communication devices. Frequently I will ask them questions or say things even though I know they won't respond verbally. Is this rude? The student usually responds joyously so I continue to talk to them.

i cannot speak for people with autism but i love it when people talk directly to me even when i cannot respond verbally. i think it is rude when people ignore me because it makes me feel like i am not valued and an outsider in whatever we are doing

Thank you for taking the time to do this. How has it changed how you deal with your family and friends?

it has made a huge difference for everyone. we get along much better because we can talk about things instead of just telling me. it has strengthened our relationships and i feel much closer to everyone.

my old teacher put it this way once: imagine you are in a foreign country where you can understand the language but not speak it and you really need to find a bathroom. after yelling about it for a while with no success communicating, both you and who you are trying to ask for help from are very irritated and you still really need to use the bathroom. you come back a year later and can speak the language, you ask for the bathroom, get it, and everyone is fine. i think that is probably a very good way to help people understand the change.

Hi, thanks for doing this AMA!

Since you started using the internet, which page do you find yourself browsing the most? Which features make the pages easier for you to navigate?

(As a frontend developer i've dealt with a lot of issues regarding accessibility recently, couldnt resist asking :) )

i use tumblr with an add on for one click reposting, manganow and mangahere because i can just use arrow keys to navigate the pages, and youtube because the thumbnails are big enough to click without having to struggle with the mouse too much.

the places i read manga are the easiest because i don't have to mess with a mouse. any place that allows navigation with a keyboard is very easy for me.

i like reddit a lot (makeup addiction especially) but it can be hard to navigate on my own.

What impact has this had on your life? What kinds of diverse applications can it be used for in your daily routine?

i can make choices! this is the biggest impact. in everday i can choose my clothes, my hair or makeup, what i want to do, where i want to sit, where i want to go, if i am not feeling well or uncomfortable in my chair, what i want to eat or if i want to eat by feeding tube, if i want to put on or take off a jacket. i do not have to wait for others to ask me before i can try to say what i want. i do not have to sit through scooby doo anymore because my grandpa thinks i am 6 ha ha ha. i feel like an adult. i can call for someone if i need help and am allowed more alone time. before i had my device many people thought there was nothing going on in my head and now i am treat better. i graduated from my special needs school and am going to an adult program at a local community college soon

i am able to control the tv, the laptop, the phone and the lights. i cannot do everything with those things but enough for some independence

Oh wow, I wasn't quite expecting that! That's so good to hear, too! It caught of caught me off guard and actually got me a little choked up. :D I'll bet just being able to express yourself has to incredibly freeing. Sometimes I guess we don't all realize all the little stuff that's so easy to take for granted.

And congrats on getting into the program at community college, too. So you can basically sync the system with your major electronic devices. To what degree of independence do you have? I presume you likely need someone at least nearby in case of any emergencies? How about getting around, going to classes and stuff? Are you able to get out on your own fairly regularly?

i do not have a lot of independence. i am able to move my head some and one of my arms about 3 inches side to side. i can open and close my hands but they are stuck folded close to my arm http://i.imgur.com/yzyYyWx.jpg

i have an aide with me most of the day for medical monitoring, getting around, and sign language interpreting. i do not go out on my own.

I'm sorry if this is a personal question, but I am curious about your hand. From folks with cerebral palsy that I have seen, their hands are often like that. Is it uncomfortable? Is it a problem with the underlying bone structure, or an effect of muscle constriction?

i cannot speak for everyone who has hands like mine because i am still learning about my own body :-) for me it is both. in a few years i will have a procedure that will break one of my wrists and realign it hopefully giving me more use of it.

it is only uncomfortable when someone tries to pull my hand into a proper position. it just does not go that way ! this is what it looks like underneath if you are curious http://i.imgur.com/mcKP7i6.jpg

For more information look up "upper motor neuron injury" online.

Don't know about what it feels like, but it's a problem with the nerves running to the muscles of the arms. The muscles of flexion are constantly contracted, resulting in the "typical" flexed arm that's close to the chest with the wrist flexed, and sometimes the fingers folded in, too. This happens to varying degrees of course.

I should also point out that this sometimes occurs in the legs, but often with the extensor muscles. When you see people "throwing their leg around" or dragging it behind them, you're seeing an upper motor neuron injury.

I would love to hear from OP regarding: "what does it feel like"

Is the constant life-long contracting responsible for some of the misshaping of the hand in OP's picture above? Is it possible some treatment with something like botox to paralyze some of the muscles would lead to more flexibility and usage over the years if treated early?

i do receive botox twice a year which allows my arms to come to my sides and my thumbs to come away from my palms. i also have a baclofen pump in my abdomen. it helps a lot but causes some problems too. ive experienced a lot more drooling and had to get a feeding tube because it made it difficult to chew and swallow.

How did you get paired with your aide?

Aide here. I was hired by a home health agency that her family goes through to find help. I was initially chosen because I am around her age, can lift heavy, and speak ASL. I went through a month probation period to see if I was a good match. Luckily, she liked me and I got to stay.

Are there things that you wish the interface was able to do that currently isn't possible? Have you thought of functions that this interface could be equipped with that could help you or others in a similar position?

i would like an extra screen facing away from me on the other side of the device. i am deaf and to talk to deaf people they need to stand behind me to read what i am saying. this makes hard. i have not thought of other things because what i can do with it now can be overwhelming

Congratulations on mastering this form of communication. If you would like a person of which to correspond, please message me. I would be honored to become friends with you.

sure! i would love to write with anyone. :-)

How do you spend most of your time? Learning? Or being entertained? Or some combination of the two? Or what?

both. i spend my mornings learning and my afternoons playing. i like to be outside and with people but i spend a lot of time reading manga and watching tv because i can do those things myself

Favorite manga series?

skip beat!

do you like One Piece? :D

i have read a few chapters but i like romance and school life types better :-)

Have you considered getting involved in clinical trials for brain computer interfaces?

Aide here. Not 100% sure what you mean, but she did get to use something crazy where these guys from the college put a bunch of things on her head.. oh god we both forget what they're called.. little button looking things with wires? The same things you use in an EEG. She was able to play a game where she pushed an object around in a tunnel on the screen with her mind.

Can you move your wheelchair with the eyegaze system?

no my wheelchair is not motorized. i am not sure if i could do it with a motorized chair. to look where i am going and the button to move.

What if they could build a system like this into a pair of google glass?

i do not know what that is sorry

HI! thanks for doing this AMA! I'm a speech therapist, and I work with a 17-year-old guy who uses a device much like yours (a different model, also by PRC). Have you worked or are you working with a speech therapist as you get used to using your device? If so, what kind of approach do you feel has been most helpful for you? Or, what kind of approach do you wish your therapist had taken? I would love any insight that might help me better serve my clients/patients with AAC devices.

Thanks so much!

i do not have a speech therapist and i am learning from my aide who has experience with communication devices. i hate to say it but the best approach is bribery ha ha ha. at least that is how i stopped being stubborn and learned my device. i was very used to having people do things for me and using the device is very draining physically and mentally. it was hard for me to understand why i had to do it when my family or aide knew what i wanted but made me work. luckily i will do anything for miniature m and m's and buffy the vampire slayer and now understand the importance of knowing the whole device. new devices are so daunting and sometimes it takes a little kick in the butt to get going.

My stepdad has something called Supranuclear palsy and he was just diagnosed with it. He's been suffering for about 5 years now and is 65. Do you think he could learn to use this even though he's not really good with computers? And do you think someone who is could calibrate it without having to call someone in?

Aide here. I've taught both of hummingbird22's grandparents and another worker (who doesnt have a cell phone because she cant figure out how to place an outgoing call) how to program, calibrate, and use the device. I have experience with a wide range of devices for a wide range of physical abilities. If you get one and want help setting it up and learning the machine i'd be happy to help you!

Do you play any video games?

If you don't, turn-based RPGs (without active time battle systems), visual novels, and some puzzle games may work out really well for you, since they can go as slow or as fast as you want and some have remappable controls. If you need any suggestions, I can help out with that. ^_^

i like to play wii sometimes. i use something that people usually stand on and push down the sides with my arms. i like to watch my aide play world of warcraft when she stays the night :-) one of my friends from school likes to play civilization and i am very interested in that. i hope that will more advances in devices like mine i could play those sorts of things.

I just wanted you to know that you're awesome. I work in care and used to aide for a young adult wih CP. His passing was one of the saddest moments of my life. Now I work in care for the eldely with dementia and I love my job. My question is how is your relationship with your aide? Do you have one in a one to one basis or many that work in shifts? Keep strong and keep redditing :) x

i am very sorry for your loss. i love my aides. i have one who comes in 6 days a week for most of the day, and one other who fill in around times she is busy. it is always one to one.

What would you say is the most frustrating thing you encounter as a result of your dis/ability?

idiot able bodied people who act like they'll catch cerebral palsy if they look at me too long :-P