I was born without my legs and right arm along with Spina Bifida and Caudal Regression Syndrome! Ask me anything

What is something people in society should know but usually do not know?

Hi! Thank you, this is a great question. People with disabilities want you to approach them and ask questions and say hello instead of just staring at them. I have had so many experiences with children getting pulled away from me because they wanted to ask me a question. I welcome questions and people approaching me when I’m in public. I’m just like any other 22 year old girl and I have a lot of the same interests that any 22-year-old would have.

Omg the amount of people that dont want to get caught staring at my walker so they stare me dead in the eyes. I ended up attaching a giant novelty clothespin to the front so people have an out to ask about the clothespin that stops my grocery bin from sliding off the seat as i walk.

I like that idea.

I will say that some people with disabilities feel differently than you, though - some want nothing mentioned or asked. It’s hard to know.

It definitely depends on the individual and their preferences, and each person’s preference is different!

What is your favorite thing to do?

I like to watch Grey’s Anatomy, and hang out with other people in the disability community.

It’s really good that you like that show because it may never actually end… lol

Yes it’s going on season 20 and I’m so excited for it!

How do you feel about your disability and life? What thoughts do you have on it?

I like this question a lot. I would say that my disability has given me a lot of blessings through the wonderful people I’ve gotten to meet and the different experiences I’ve had due to my disability. The medical aspects of my disability are definitely very difficult as I’ve had 27 surgeries. I am so grateful to be alive still as I was given a one percent chance of survival. Overall, I wouldn’t change my disability or my life for anything.

Interesting. Lot's of people complain a lot despite seemingly having few struggles.

What do you think is the key to hapiness? And the psychology around it.

I would say the key to happiness is accepting the things that you can’t change and changing the things that you can change. I think happiness is different for every single person, but happiness has to come from within yourself. There are several things about my disability that I could complain about, but I try to live my life the best I can every day. I find psychology interesting as a subject in general.

You have a lot of wisdom for someone so young. I was just talking to my therapist about this today. My dad passed away a year ago and I'm finding it hard to embrace the life I have and my happiness now. Thank you so much.

Thank you so much. I’m so sorry for your loss.

You are a very inspiring young woman. More power to ye.

Thank you!

Do you swim?

I used to swim competitively for nine years! I am now retired.

How about recreationally or for PT?

I had a medical surgery in 2020 that unfortunately prevents me from swimming currently, but I totally would swim if I could!

What happened? Like how did the surgery stop you from swimming? I’m curious about the different surgeries you have experienced. I can’t imagine

I had to get my bladder and right kidney removed so I now have a urostomy and I tried swimming with the urostomy but the chlorine and urostomy wasn’t a good mix. Plus my body ‘s overall strength after the surgery has not been the same.

Oh man that sucks having to stop a sport you enjoy

It did suck, but thankfully I have other things in my life currently that are just as fulfilling so I don’t miss it too much. I am very satisfied with my life.

Do you social work?

I’m going to go to school for social work.

Since you've never had legs, does the concept of having legs seem weird to you? Or even having two arms?

It brings to mind the Simpsons episode where they think the idea of having five fingers on people is weird.

Thanks!

Yes, the concept definitely is weird to me. I’m so used to only having one arm. I definitely would choose a right arm over having legs if I had the choice.

That’s super interesting! Why would you prefer to gain a right arm over gaining two legs?

I have an awesome wheelchair that gets me places, and there is mostly elevators everywhere. I would rather gain an extra arm for more independence with my daily activities. I think if I had an extra arm, I would be much more self-sufficient.

That makes sense! Do you mind sharing the wheelchair you have? I’m just curious how it compares to more “normal” wheelchairs. Thanks for doing this AMA! It’s been super interesting

Yes, I have a permobil M3 wheelchair. It can go up, tilt, and recline. It can go up to 6 miles an hour. Thank you for asking questions. I’m so glad it’s been interesting.

Oh that's so interesting, thank you!

Thank you for asking!

Why do you live with, or are you able to live alone? What kind of assistance do you need in your daily life?

I have lived alone in a college dorm before but currently I live in a group home setting with three other individuals who have disabilities. I have caregivers 24/7 who help me with most daily living activities. I can transfer myself in and out of bed to my wheelchair. I can use my phone by myself. I can eat by myself.

Do you have a pelvic bone, or do you need special supports to sit upright?

I do have a pelvic bone, and I do not need any special supports to sit up.

I'm waiting for you to start listing other bones in order to get a full map, like a very slow game of hangman.

Scapula?

Go fish.

Haha, the reason I asked is that some extensive cases of caudal regression mean the person affected has an incomplete pelvis, or the pelvis might not be properly connected to the spine, this can make it difficult to sit up. It's a complex condition, and everyone's case is unique.

It is a great question!

I do have a scapula. I’m missing my tailbone.

Thank you for posting this AMA. I’m genuinely curious, but don’t want to be offensive. I’ll ask anyway because you seem super chill. Is sex a thing for you?

Thank you for the question. It is not currently due to my own personal priorities of life right now.

I was going to ask something similar but more so along the lines of how do you go about dating / how have you in the past? Is it more difficult with the expectations around sex / dating culture?

I have dated before. Most of it has been long distance it never came to that point. I’ve also only dated other disabled people.

Is there anything related to your disability that would prevent you from having kids if you wanted to? Er, as in childbirth, not adopting or something.

No there isn’t anything related to my disability stopping me from having kids. I do want kids one day. It’ll be very high risk if I got pregnant.

What’s something that makes you crack up laughing? 😃

Abbott Elementary! It’s on hulu and HBO Max!

Absolutely love that show. Are you a social worker? I’m a peer support specialist 😃

It’s a wonderful show. I am going to go to school for social work. My goal is to work with medically complex children and their families. That is so cool about your current job. Thank you for what you do!

What got you interested in social work?

What got me interested in social work is the amount of resources that my parents and I have been given and I want to give back to the disability community. All of the resources has helped me get to where I am today.

You're a nice person. Good for you.

Thank you so much!

So so awesome! I’m thinking of doing RT or social work- I’m 48 so it’d be a late start, but I work at a state hospital so I’m at least where I want to be!

Thank you so much. Education is a lifelong journey so it’s never too late. Working at a hospital is also my goal.

What's a thing you would like to do but can't because of your boundaries?

I would like to be able to travel independently , but that is currently not an option for me.

Where would you like to go to?

Japan and the UK primarily

Have you been traveling with assistance any?

Yes I have been to canada and many different states with the assistance of my dad.

Did your mom have diabetes? I’m wondering the association with your diagnosis and mom w DM? It’s something we’ve learned.

My mom did not have diabetes. We have done a lot of genetic testing and doctors have not found a reason for my diagnoses.

What's the best Christmas present you've ever received?

I would say the best Christmas present I’ve ever received is my iPhone. I was 12 when I got an iPhone and I thought it was super cool. I still use my iPhone every single day!

That's an awesome gift for a 12 year old. I'd be stoked!

I definitely was very excited.

What is your go to pizza?

Cheese pizza

Do you do any work outs or exercising?

Yes, I do adaptive workouts with an adaptive sports organization and my main focus of exercise is by shoulder.

My shoulder not by shoulder

Did you ever think so many people would think you're this cool? And do you help those that may deal with depression because of their disability? You seem like you've learned to adapt pretty well

Thank you so much. That is so nice of you. I do try to help those who have depression due to their disability. I try to encourage them and show them that they can do things. My parents and my family are my biggest supporters and they have always believed in me.

Have you ever struggled with depression?

I would say yes, in 2014 when I was 13, but I have been blessed with a great therapist and I’m doing so much better now.

How many people don't care at all about your disabilities compared to people who made a thing out of it?

I would say that majority of people don’t make a huge thing about it. I think people once they get to know me get more comfortable with my disability, and start to not notice it.

Sounds like it works for you mostly :) That's how it should be!

Yes absolutely!

What do you do for work? And do you allow yourself to have a good sense of humor about your disability? I wasnt born disabled but ended up that way. It took me time to accept my life was different going forward and i would likely be in pain the rest of it. I try to find the humor in it as best i can though.

I’m a Good Life Ambassador so I give presentations about disability etiquette and disability awareness. Yes I allow myself to have a good sense of humor. It has helped me so much. I think humor is the best method along with accepting your disability.

Oh cool so your disability is also a big part of your job. I agree about the humor. It took me awhile to get there, until i did i was rather angry about it but once i accepted everything and started laughing about the dumb things it causes i became a much happier, healthier person.

Yes my disability definitely affects my job a lot by sharing my lived experiences. I’m so glad that you have accepted your disability!

Do you have any advice for when you get frustrated you can't do something, specifically the upper body or energy wise?

I have very little use of my right hand amongst many other things including neurological issues and lately I've been really frustrated with the tons of things I can't do( or finish )because of my disabilities. A lot of able bodied people say things that just feel like empty platitudes because they don't have a clue what it's like, and they love to be all "you're inspirational, I couldn't do that" and it's exhausting. By" that", I mean existing. We don't have a choice.

I'm glad you did this AMA. I wish I knew you in real life so we could have the chance to be friends because people who understand the physical struggles are few and far between.

I'm sorry if this is all really awkward, it's been a stressful night so I'm not the best at saying my thoughts right now.

It is completely understandable to be frustrated, and I definitely understand that. I definitely get frustrated sometimes with things that I cannot do. I’ll let myself be frustrated, and then I remind myself that I’m doing the best I can. The fact that you attempt to do things matters. I know how frustrating it can be though. We still can be Internet friends. I’d be happy to talk with you.

Thank you for saying that the fact we attempt things matters especially... My family has always been "you can do things exactly like anyone else" but it's simply not true because when I fail I'm told I'm not trying hard enough when I just can't push myself past go and am giving 100%. Like I think I know my own limits better than others, but it still gets to me even though I know they're trying to be encouraging ( if ignorant!)and I struggle not to be jealous and bitter even with many years of therapy. Growing up like this all your life is a blessing and a curse because we know nothing else. Maybe it would feel more cruel if we did know what it was like to be able bodied.i don't know.

I would love to be internet friends! I'm 22f and this post reminded me I'm not alone and that was a priceless gift when I'm feeling more and more useless because I keep falling behind in so many expectations, plus maybe we can swap stories and things. Like is it hard to lift yourself up out of the wheelchair one armed to get on the toilet? I don't have one yet but I broke bones in my feet a few times and I wouldn't be surprised if it happens again plus for really long trips I've been begging for years to get a wheelchair for when it's too much( I basically was even more dependent on my parents then I already was and it sucked). And I don't have anyone to ask these sort of questions, most of the physically disabled people I know have their arms and hands unaffected or I hear it's rude to ask even though I'm just trying to know what to expect? I've lost a lot of stamina in the past couple years as more life expectations grew and I used to have a walking brace but it doesn't work for me anymore... I just want to be prepared because I know my body will need to rely on one one day. I want to get involved with disability advocacy groups but I'm still trying to figure that out.

I do have two adorable bunnies and they make me feel like I have a purpose though:)

Of course. Yes, you know your limits more than anyone else. I’m also 22. I’m going to message you.

Do you have any hobbies? How do you like to spend your time?

I like to play Sims four. I love to make TikTok’s. I like to hang out with my friends. I like to watch Netflix. I like to talk to my friends.

What platform do you prefer for gaming? What peripherals do you use to make controlling them possible? Have you ever looked into or used the Xbox adaptive controller?

Top 5 games?

I prefer my PC for gaming. I just use the regular keyboard and mouse pad. I have looked into the Xbox adaptive controller, but I have not used it. Top five games. 1. Sims four. 2. Sims three. 3. Sims two. 4. Wii sports 5. Professor Layton series.

I absolutely loved professor Layton games on my Nintendo DS! Never did get into the sims much. #pcmasterrace

Yes, the professor Layton games were so good. That is completely okay.

whats your fav sims expansion pack

Get to work is my favorite expansion pack because I like the doctor career.

I just want to say, having read all your comments, you seem like a genuinely amazing human being! Thank you for being a light in a world that is slowly going dark. I just gotta ask, why no country music?

Thank you so much. I appreciate that. I don’t have a real reason. Other than it just doesn’t really interest me. I’ve tried it though.

How is your relationship with you parents & family members?

I have a good relationship with my parents. I have a good relationship with my family. I have two siblings who are younger than me and they are both able-bodied. I am a very proud big sister.❤️

What does your typical day involve?

My typical day involves either going to work or going on zoom meetings for the different things I’m involved in. I go to an adaptive sports organization a few times a week. I go to doctor appointments occasionally.

I don't mean this in a mean way so chill with the down votes but do you ever wish you weren't born?

Also to everybody else, please don’t downvote. It was a valid question just like the other questions on here.

No, I don’t ever wish I wasn’t born. I feel lucky to have the life I live, and I feel like I was made this way for a purpose.

Is there any impact on general life expectancy?

Generally, there is not any impact on general life expectancy I have gone through sepsis a few times due to different infections, however I hope to live a very long time.

Your life outlook is inspiring. Thank you for sharing your experiences with others! I work in a rehab setting with mostly patients who were previously able bodied, but are newly disabled due to illness or injury. Do you have any advice or words of wisdom for when things get hard?

Thank you so much. I appreciate that. I would say things may be hard right now but things will get better. I encourage them to get involved with the disability community as that is very important. There’s a lot of adaptive sports out there they could get into. I would tell them that they’re not alone, and there are resources for them out there to continue living their best life.

Thanks for doing the AMA! Are there any policy changes that would make your life substantially easier? How can government better support disabled people?

Raising the amount of money that a disabled person could make without getting their Social Security taken away. Allowing wheelchairs to go on the plane. Increasing the pay for caregivers. Expanding healthcare.

What's it like living with other people with disabilities? Do they have similar disabilities to you? Do you like the people you live with? Did you get to choose who you live with?

I enjoy living with other people that have disabilities. It’s a understanding that many people don’t have and you get to share resources with your roommates that they may not know about. They do have similar disabilities. I do like all my roommates. The local county board helped me find my house, so I got to meet them during a house tour. I then decided to move in.

Do you all help each other with different tasks? And do y’all have additional assistance from anyone else who doesn’t live there for daily activities?

The caregivers mainly help us with our tasks. One of my roommates opens the door for me. The caregivers don’t live here. They just come to work. Mainly the caregivers are there for daily activities. Thank you so much for asking.

What kind of music do you listen to? You said in another comment that your wheelchair's speed is up to 6 miles per hour (I think). If it had no speed limit, how fast do you think you'd go?

I like to listen to all music except country. I apologize country fans. I think I would like to go probably 20 mph.

If you could change one thing about society or the world around you to make your life or the lives of all disabled people better, what would it be?

I would raise the amount of money that you can make as a disabled person who receives Social Security, so that you’re not constantly in poverty. I would also pay caregivers way more than they get because I rely so much on my caregivers and they deserve a livable wage. I realize that’s two things.

I have friends on Disability Support here in Ontario. The tiny amount they are expected to survive on is embarrassing. To eat healthily they have to rely on food support from friends and family or food banks. And that was before the crazy rent inflation going on here.

I am so sorry to hear that. I will send lots of positive vibes their way. I have always enjoyed Canada when I was visiting, so this makes me sad to hear.

What are your hobbies?

​

Do you have a sense of humor? (Like have you done any interesting pranks or halloween costumes?)

I like watching medical dramas. I like hanging out with friends. I like being involved in the disability community. I like playing Sims four. I do have a sense of humor as I make a lot of jokes about having no legs. Most people just stare at me instead of laugh, when I make those jokes. I would rather them laugh at my jokes. I make a lot of different jokes about my spinal conditions. So I definitely have a sense of humor.

What is your favorite movie?

Annie (all the versions).

My niece has CRS and is getting into her teens. What's the best advice you can give her as she gets older?

The best advice that I could give is to find her group of supportive friends. I would tell her that she is perfect the way she is. I would tell her that it is okay some days to be upset about your disability because that’s normal. I would encourage her to learn more about her medical history so she would be ready when she turns 18. I would tell her just to put herself out there and see what she’s interested in. I’m sending lots of positive vibes her way and I’m always here just a message away.

Hello. Do you have any crush? If yes what do you like about them?

I don’t have a crush currently!

Is there a question that you expected that nobody has asked yet?

If my siblings were able-bodied, was the question that I was expecting. A lot of people are surprised when I told them that my siblings do not have disabilities.

How do you manage to do ordinary daily stuff?

My caregivers do most of my daily living activities. I can drive my wheelchair by myself. I can go out in public by myself. I can transfer myself in and out of my wheelchair. I can eat by myself. I can use my phone and computer by myself.

So where did you learn it(do daily stuff by own)(any therapist trained you for this?)

Physical and occupational therapy. I’ve been in physical therapy since I was 18 months old. I’ve been in occupational therapy since I was three years old.

Therr is a Star Trek DS9 episode titled 'Melora'. It has some problems still (made in the 90s), but I was reminded of it because I was reading this articleabout disability and Star Trek .

Have you seen this episode? May not be your jam, but curious.

I have not watched it but I’m definitely interested. I’ll have to read the article as well. Thank you so much for letting me know.

I hope you find it all worth the time!

I most definitely will.

Reading through this: your positivity and mental strength is truly inspiring, I hope you continue to help others and always live your best life.

Also do you have any long term career/life goals?

Thank you so much. My long-term goals are to help the disability community as much as I can. Work a full-time job and be able to support myself. I want to have a family someday.

What do you do when you get an itch somewhere out of reach?

I ask my caregivers for help or try to use what’s around me to itch.

The goofy part of me was wondering if they trained service animals for that yet.

Haha they probably could!

What’s your sex?

I was assigned female at birth and I identify as a girl. I use she/her pronouns

Does your disability cause you physical pain or discomfort or do you feel normal?

My disability only causes physical pain if I’m in my wheelchair for like 12 hours. My hips mainly hurt if I’ve been on my hips all day.

[removed]

Yes I sure am naturally left handed by default.

What are the biggest sources of inspiration in your life?

The biggest sources of inspiration in my life are the disability advocates that have advocated for people with disabilities long before I was even born. I’m really passionate about children’s healthcare, so I love getting to share my story. My dad because he works so hard for our family. Also, the many doctors and many nurses that have kept me alive. These last 22 years is definitely a big source of inspiration.

Have you ever seen the Documentary Crip Camp (on Netflix). The film spends a lot of time covering the creation and work of disability activists towards the ADA (particularly Judy Heumann). Some very cool old footage and contemporary interviews.

I have seen the documentary Crip camp, and I absolutely love it. I have seen the documentary three times. It is a wonderfully done documentary that means a lot to me.

Great answers :D. You seem like a really happy and levelheaded person, best of luck in your career & future in general.

Thank you so much. I appreciate that.

So awesome!

Ok. A couple questions. First, what music do you listen to?

Second, you should look into training for a career in User Experience Design. The discipline requires a high degree of empathy, and I can tell from your writing that you would be a natural. We certainly need more practitioners in the field with first-hand experience with accessibility issues. Oh, did I mention that it pays really well?

I guess that was really only one question and a bit of advice, but I mean well. Lol

Thank you. I like to listen to Pop music primarily along with other types of music, such as instrumental, music, and indie music. I will look into that career. I have not heard of that before. Thank you so much for letting me know.

You’re Killin’ it! Keep goin’!

Thank you so much!

Hi there. Growing up as a toddler, what were your thoughts on your disabilities? What effect did looking at other kids doing things you couldn't do have on your mindset? Thank you.

I did not notice my disability until I was four years old. I definitely remember thinking the answer that I was born this way was a bit boring, but I was four years old at the time. I would say that I definitely wasn’t upset about the other kids and what they could do until I was about 13. My parents were very supportive and I was involved with the disability community from the age of three on.

What was your mom's prenatal health like?

My mom’s prenatal health was good. My parents found out that I had disabilities when they were 16 weeks pregnant with me.

What kind of music do you enjoy?

I like pop music, Indie, music, alternative music. I like instrumental music.

Which places are the most accessible for you and which places are the least accessible? I had a friend in high school with disabilities and there were certain movie theatres that were not ADA compliant (This was the 80s)

I would say that most places are pretty accessible. I have run into a few restaurants that aren’t accessible. I am very grateful for all the advances we have come with so far with accessibility.

How are things going in your life? Did you have a nice Thanksgiving? Are you looking forward to Christmas? Hope you are happy and well.

Thank you so much. I would say things in my life are going pretty well. My Thanksgiving was very nice, and I am very excited for Christmas. Thank you so much. I am happy and doing well.

That’s great to hear! You seem like a very kind, happy, and positive person and it seems like your life is going “swimmingly” :D

Thank you so much!

Would you consider your left arm as strong? Like, can you lift your entire body with it?

I can transfer myself so I would consider that strong.

If you could be healthy and have all your limbs for one day, what are some of the activities and things you would like to do?

Imagine money not being an issue.

I would like to drive myself somewhere. I would like to be able to go to the bathroom by myself. I would like to try hopscotch and jump rope. I would like to play soccer.

Do you like living in a group home? Are you in the United States? Was it difficult to find one you liked?

I do like living in a group home. I am in the United States in Ohio specifically. This is my second group home I have been in. Thankfully, my support administrator was very helpful finding me a group home.

Are there any prosthetic related developments that you're following? If so, would you opt to go for them? I've heard of neural network integration for new generation prosthetic limbs

I would love to try prosthetics again one day but right now I don’t see it as a current option. I am hopeful for what the future has but I’m grateful for the wheelchair. I think I would only opt for it if it was exponentially better than a wheelchair.

Thanks for the answer! You mentioned "again" so I'm assuming you've used them in the past. Any details you're comfortable sharing with that?

I can share. I had prosthetic legs for about two years from 2010 to 2012. I was nine years old when I started it. One of the legs was Velcro’ed on because I did not have enough residual limb. The left leg was a normal socket. It was a lot of hard work and I eventually fell fracturing my arm so that ended my prosthetic journey.

What are some of your hobbies? Any sports? Board games?

I used to swim competitively. I like to play video games. I like to hang out with friends. I do like boardgames, especially the Game Of Life. I like to make TikTok’s.