What do you find most difficult living with a disability?

Not being able to be 100% independent. Although I always find a way to do whatever I put my mind to, having to rely on others is something I wish I didn‘t have to do. With that being said, having SMA is a part of what made me who I am and I wouldn't of picked any other seat (literally, this chair is comfy!)

 

What is your disability?

I have spinal muscular atrophy type two. It is a form of muscular dystrophy that affects the motor nerves in the spine causing muscle weakness. It is different for every individual even if you have the same type. Go to CureSMA.org for more information!

 

Can you feel your body?

Yes, for me personally, SMA does not affect my feeling only my strength.

 

How do I get my child to stop being so critical about everything, including themselves?

Every child is different and I think that the best way to help anyone to not be critical is to ask them why they feel that way. I don’t think that this just applies to children, when anyone is critical especially of themselves it is stemming from somewhere. Anytime that I am around someone who is critical or negative I like to look behind the obvious. Why are they reacting in that way and is it really about what they are saying it is about. I don’t have any children yet so I do not feel as though I am able to give parent advice, but what I do know is that my parents didn’t leave room for me to be critical of myself. If at any time I was negative about something I thought I couldn’t do, they pushed me and showed me that I could. I thank them every second of every day for that.

 

How do you shower?

I have an incredible bathroom that has a roll in shower and use a special chair that allows me to get anywhere I need while in the bathroom. My assistant helps me in the shower with the things that I can’t do myself. When traveling, I make sure that my hotel room has a roll in shower as well that way vacation doesn’t mean stinkation. Sometimes you can also ask the hotel if they have shower chairs or the name of a company that they have used to rent shower chairs, hoyer lift, wheelchairs or anything else that you might need.

 

Do you cook yourself?

I am a big fan of cooking! I am not physically able to cook on my own but because it is something that I enjoy so much I make it a point to be as involved in cooking as I possibly can. I create new recipes and I ask my family, friends or care assistant to be my arms to help me create the meals of my dreams! Which sometimes lead to a lot of laughs and stories!

 

How do you secure personal caregivers?

Finding care and good reliable care is very difficult! Right now I am very lucky to have a wonderful care. When I am looking for someone to hire as a personal caregiver I have had great luck with Care.com but I always make sure to ask a lot of questions, be 100% honest and transparent. It is also important to ask questions about your caregiver to make sure that your personalities match. You do and spend a lot of personal time with each other so it is important that your values, interests and personalities are compatible.

 

How do you go to the bathroom in a public community?

When traveling, especially road tripping, bathrooming in public is inevitable. Paying attention to bathroom accessibility along the way is key! Knowing something like a Starbucks are always family bathrooms make finding a big bathroom that I can lay my chair down in a lot easier! I always have friends and family to check out the bathroom size for my own inventory list and never assume the next bathroom will be big enough because accessible bathroom doesn't always equal big bathroom! Also, if you don't need the handicap stall please don't use it. There's usually only one handicap stall to ten regular stalls! Lastly, don't always assume that someone didn't need the handicap stall.

 

Can you have a baby?

Yes I can, and I definitely want children one day! Because I do have a physical disability, it is important for me to take care of my body and to be overly prepared when that time comes but I can’t wait for the adventure! (One day) There are some incredible Moms out there with SMA and other disabilities... Check out one of my favorite Moms on Instagram @carlihamiltonnn

 

Do you date and do you talk about your disability right away?

Yes I do date, and I think it is extremely important to talk about things upfront. I am definitely an open book, and I believe that you should be honest and open from the beginning that way you can start your relationship, no matter what kind of relationship that is, with all the cards out. I like to take this rule for any type of relationship, even friendships. It is so important to me that the people around me know who I am 100% because I like to surround myself with people who accept me for 100% of who I am. Remember that being yourself is always best and never be afraid of telling someone who you really are or about your disability because you telling is always better than them assuming.

 

What has been your biggest challenge traveling?

Traveling has always had its challenges but the reward is always worth it! I believe traveling anywhere is always possible, just a few extra steps need to be thought about… Accessibility of the location, hotel, transportation and care. Air travel, although possible isn’t easy or comfortable. Wheelchairs and equipment often get broken due to not being handled properly and being put under the plane. Hopefully the future can bring better ways for wheelchair users to travel by air easier!

 

What is the most accessible place you've traveled?

LONDON has been, by far, the most successful place I've ever traveled! Check out my London stories on Instagram to see how incredibly accessible it really was!

 

How do you deal with inaccessible places?

I always make sure to call places ahead, sometimes more than once, if I feel they didn't sound confident lol I also found it important to ask detailed questions. Always ask specific questions about your accessibility needs. Do you have a ramp, elevator or flat access to all areas? When making a reservation I make sure to ask if the table we are sitting at is accessible. Some restaurants have step downs to the table areas or steps up. Make sure to ask about the accessibility of the bathroom. NEVER just ask, "Are you accessible?" Not everyone knows what that consists of. I also sometimes like to use Google maps on Street view, it is a great way to see curb cuts and street accessibility as well as building access.

 

What independence have you gained since high school?

I handle everything from my care to my wheelchair and everything in between. It is important to know your capabilities and especially your needs. Be honest with yourself and don't be afraid to ask for help in order to be able to have as much independence as possible. My parents always made sure to include me in everything, even if it was just to sit in on an IEP meeting so that when I was older I would know how things work and what questions to ask!

 

How do you deal with in accessible places and what are some accessible things you like to do for fun?

I find that most things are accessible! The things that aren't just need a little research and imagination. There are more accessible things than are advertised so when you see something that you want to do but you think it might not be accessible… Always always call and ask! And be specific! Never just ask, "Are you accessible?" Ask questions for your needs! Google maps on street view is also a great way to see curb cuts and street accessibility as well as building access when traveling.

• Are there any steps, an elevator, ramps?
• Is the table in an accessible location? (I have actually been to restaurants where the restaurant is accessible with a ramp and everything but the table they sat me at was down steps)
• Is there accessible transportation? (In Paris you need to call a certain number in order to get an accessible taxi)

 

How old were you when you stopped walking?

I got my first wheelchair when I was 4 years old.

 

Why are you vegetarian?

I became vegetarian because my stomach was having some issues. It all began with me just going to do it for one week to see how I felt and that has lasted three years (I think lol I lost count)

 

Do you find Disney to be accessible?

I think Disney is an incredible place to travel for accessibility but they do have a few things that they could improve on with their rides. We can all always improve! A few of their new rides are not accessible and they 100% could be!

 

What is on your travel bucket list?

I would honestly love to visit every country! A big thing on my bucket list is to live in Bali for a few months!

 

What is your favorite pick me up when you're feeling down?

• Family and friends
• Harry Potter movies (when I am having anxiety I always put on Harry Potter)
• Disney Parks instrumental music
• Meditation
• Self-care

 

How does your disability affects relationships?

I think that just like everything else, every part of who you are affects a relationship. Some people might not like that you are loud while others love that about you. Some might only want to date someone of the same background as them or only be attracted to a certain body type or hair color. We all have differences, quirks and qualities that attract different people. If we didn't we would live in a world of one giant orgy LOL So yes, I have talk to people who are not interested in dating me or act uncomfortable with me because of the chair and have a literally told me that but those are not my people and I'm so thankful for the people who love all of me and love me for the sitting on my butt lady I am!

 

How is commuting to NYC?

It is accessible but you have to take a few extra steps or a little research for a few things…

• Subway: Does have accessible stops but not all of them have elevators and not all of them are reliable. You also have to make sure to be under the wheelchair sign so that the platform is flush with the train otherwise there is a big step, I always suggest letting the conductor know that you are getting on if possible.
• Uber and Lyft have access for vehicles but not all drivers have locked downs or a seatbelts set up or know how to use them.
• Buses are accessible!
• New Jersey transit most shops are accessible. Ask for the track number early so you can get down to the platform and ask the conductor for the ramp!
• Most corners have cut outs but look across the street before crossing because some are steep or have large bumps and it might be better to cross a different direction.

 

Have people ever treated you differently?

I have had people speak to me differently or act like I am unable to do things. I also have had people be overly helpful and attentive where they tell me how brave I am just for doing every day things. Or people try to relate by saying, I broke my leg once and was in a wheelchair. I even had someone tell me how inspirational I was for being at a club. I didn't know drinking was inspirational but I am glad I inspired you to enjoy life! I think that just comes with lack of knowledge or experience with people that have differences. With that being said, I also have had many wonderful experiences and I try to not let the way others act affect how I feel about myself. But we all know that sometimes you can't help being upset or irritated by what others say. So treat everyone with kindness and respect!

 

Does it bother you or do you notice when people stare?

I don't notice as much as someone who is maybe out with me for the first time. I generally do notice though and usually just smile... I might even say hello if they are still looking at my fabulous self! If it is a child, I always say hi and if a parent tells them to stop or shh I always say it's OK and say hello and even answer their question if I heard them. Children are curious and I love to answer their questions!

 

How does it feel to rely on an assistant for a certain task?

Relying on others for help can definitely get frustrating. It has nothing to do with the people who are helping and everything to do with the frustration of not being able to do things yourself. Sometimes it's difficult to explain how you want or need help; which can get frustrating because you can't just show them. This is why it is important to have a good relationship with the people who help you and explain to them how you're feeling so they know it's the situation and not them. Take a deep breath and find ways to explain yourself in a way that works for both of you. Maybe explain in smaller steps or if available (like hair) show a tutorial!

 

What did you do for Disney?

I was a part of the college program in 2011 where I started in merchandising and then moved to entertainment. I continued seasonally as a Cast Member until 2013.

 

What is your skin care routine?

Skin care to me is the most important type of make up we can have. I am a big fan of using different tools such as the Dr. Dennis Gross Spectralite Faceware Pro.

 

Do you do here on make up?

I do! I need help lifting my arm up and opening products but I do the make up application myself. When in a rush or with larger movement, such as foundation I do require help.

 

What is your Hogwarts house?

Hufflepuff!

 

What is your favorite pick me up when you’re feeling down?

Family and friends, watching Harry Potter, Disney Parks instrumental music, meditation and self-care

 

Will your mobility get worse as you get older?

Yes, my muscles will weaken overtime BUT there are a lot of great treatments out and more being developed to help stop the deterioration of the muscles and I am excited to be receiving Spinraza as of 12/23/2020.

 

Is it hard to find clothes and shoes?

Simple answer yes. I have a big butt with skinny legs. I’m 5’5” but when I sit I look 5’ so finding shirts that fit me well in my chair probably means it’s going to be a belly shirt when I lay down and am stretched out. Pants are always difficult because my body is in a sitting position for getting them on, they have to be stretchy and high waisted. A lot of times the dresses I wear are actually long shirts that look like dresses because I sit! Shoes are an obsession of mine but also an enemy. I have to wear booties that open all the way and that has a stiletto heel for my permanently ballerina foot. They need to zip up or tie so that my shoes don’t fall off! Fashion is an art of expression and I like to create that art in a way that fits me best not always how it is shown on the rack.

 

Do you ever feel sad or depressed because of your disability?

I am never sad or depressed because I have a disability. That doesn’t mean that I don’t have my bad days and that I don’t get frustrated not being able to do the things I wanted or wish I could. I get sad when I don’t get to go somewhere because they are not accessible. I get sad when I can’t just physically help someone when I want to. I get sad when I have to lean on other people for things that I wish I didn’t have to.

Despite anything that might frustrate or upset me that I cannot do, there are thousands of things that make me happy that I can do! I can travel, I can love, I can support, I can do anything I put my mind to; but to answer your question I think we all have bad days and those are the days I am most thankful for my community and my support system!

 

What is on your travel bucket list?

I would honestly love to visit every country! A big thing on my bucket list is to live in Bali for a few months.

 

Do you find Disney accessible?

I think Disney is an incredible place to travel for accessibility but they do have a few things that they could improve on with their rides. We can all always improve! A few of their rides now or not accessible and they 100% could be!

 

Can you stand?

I walked till five years old. Stood till eight years old with the stander (which I hated).

 

Why are you vegetarian?

I became vegetarian because my stomach was having some issues. It all began with me just going to do it for one week and now that one week has lasted three years (I think, I lost count and depending on when you’re reading us lol)

 

What inspires your fashion and make up?

I love to play with make up and I get inspired from Parisian looks and New York Street style.

 

What is Spinraza and what is it going to do for you?

It is an injection that goes into my spinal fluid that helps protect and maintain the muscles I have with the possibility and help of helping me gain some strength back.

 

What does SMA affect for you?

I have a SMA Type 2. My muscles do not grow and or not strong enough to support my body. At this point in my life, I cannot stand, walk or lift up my arms above my chest but I do still have movement.

 

What are ways I can help?

The Muscular Dystrophy Association has great volunteer opportunities for people wanting to get involved as well as Cure SMA.

 

Are you in pain?

I do not have pain but sometimes I do get muscle fatigue and soreness if I move the wrong way or do too much.