Friday, October 20, 2017

Special Needs Spotlight || Vin + Sara

Hi! My name is Sara, and my boyfriend’s name is Vin. We are average twenty-three year olds: we go to school (I’m in the middle of getting my Master’s in early childhood special education and Vin is getting his bachelor’s in aviation administration), we like to hang out with our friends, we go out for drinks, and we like going to concerts. It just so happens that we were both born with disabilities. I have cerebral palsy, and Vin has something called arthrogryposis multiplex congenita, which is a rare muscle and joint disorder that occurs in 1 in every 3,000 births, so he uses a wheelchair to get around. In the time we have been together, we have never let our disabilities stop us from doing whatever it is we want to do, we just figure things out as we go along.

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Miggy: Welcome Vin and Sara! I'm very excited to be interviewing you both today as you are the first disabled couple I've ever interviewed. Let's start at the beginning--When did your families first learn about your disabilities--was it during an ultrasound, shortly after birth or sometime after that? Have they ever talked to you about what those early days were like and how they felt? At what age did you start having an understanding that you were different from other kids and how did you feel about that growing up?


Sara: I was diagnosed with cerebral palsy when I was around a year and a half old. As I said in the intro, I was born three months premature, so I was always considered “high-risk”. It wasn’t until my parents noticed that I wasn’t hitting developmental milestones (lifting my head up, crawling, etc.) and I was evaluated by a neurologist that they knew the real impact my prematurity had had on me - they found out that it had probably been caused by bleeding in the brain. The biggest worry that my parents had after I was diagnosed was probably what my life was going to be like, if I was going to be able to walk and talk and be able to have a “normal” childhood. Everything in the beginning was a lot of “wait and see.” Once I started elementary school, that was when I really started to notice that I was different from the other kids in my class - I was the only one that wore braces on my legs, I was always missing school for doctor’s appointments and things like that - and it was actually really hard for me. I was obsessed with the idea of being “normal” and kind of tried to act like I didn’t have a disability even though it was pretty obvious that I did.

Vin: My parents knew about my disability as soon as I was born, because my mom had had amniotic band syndrome when she was pregnant with me, which is when the amniotic sac is punctured, creating bands of fluid which my hands and legs in particular got tangled in. Because of the amniotic bands, I’m missing my right leg and my ring finger on my right hand. They originally thought I had something called trisomy 16, which is a fatal chromosomal disorder, and they thought I only had a few days to live. I didn’t actually have trisomy 16, and it took doctors about six months to diagnose me with arthrogryposis, which they found out was caused by the amniotic bands. The entire time I was in the hospital, my mom didn’t leave my side. When my dad called all of my family members to tell them I was born, all he said was, “The baby was born, it’s a boy, he has one leg.” It took me a really long time to realize that I wasn’t like everyone else my age, it probably wasn’t until third grade that I was like, “Hey, I’m different.”


Miggy: Can you talk a little about what your childhood and family life was like growing up? How did your family treat your differences and did you have a lot of support from your parents and siblings? Is there anything you wish they would have done differently?

Sara: When I was younger, a lot of my days were spent being carted back and forth to various doctor’s appointments, therapies, and I did spend a fair amount of time in the hospital having surgeries. That was really hard, moreso on my family than me for the first few years of my life because I didn’t really understand what was going on, but somehow we made it through everything. My entire family, grandparents, aunts, uncles, cousins, have been just as big a part of my story as my parents and siblings have been, and it’s been like that since day one. Anything my sister or I have needed, someone has always been there to help out. I hear these stories about families who basically shun their relative with a disability, along with that whole part of the family, and it’s just heartbreaking. I couldn’t imagine my family ever being like that. I’m one of three kids, I have an identical twin sister who also has cerebral palsy and a younger brother who is typically developing. Growing up I was always treated like a regular kid, I never got any special treatment or anything like that because of my disability. My parents always allowed and encouraged both my sister and I to try things and do things, and they gave us all the support in the world. Sometimes it was hard for me, because I couldn’t keep up with the other kids and I knew that, but at least I had tried and given it my best shot. I am beyond grateful for them for that, because then I wouldn’t have been able to do many of the things I’ve been able to do, like be in a school play, be on my school’s lacrosse team, and go skiing.

Vin: My childhood was very different from a lot of kids. I spent almost every summer in the hospital having a different surgery, and I’ve had 16 surgeries in total since I was born. I have an older sister who is able-bodied, and she’s the princess of the family. She’s always tried to take my parents’ and the other adults in my family’s attention away from me and onto her. If something happened to me, for example if I sat up on my own, my sister would try to make everything about her. My parents have always been extremely supportive and helpful, and my sister was always the one who gave me tough love. She didn’t let me get away with as much as they did and didn’t just do everything for me. She forced me to be independent and I think this is why I can do so much on my own today. It was annoying when it was happening, but now that I’m older I’m really grateful for it.


Miggy: Would you please educate us on your disabilities--what they are and how they affect your day-to-day life? How has this changed as you've become a couple?

Sara: I have spastic diplegic cerebral palsy, which basically means that my muscles are extremely tight and it mainly affects the muscles in my legs and feet. This makes it hard to walk sometimes. I walk with a bit of a limp on my right side, which makes me look like I’m wobbling when I walk, but I’ve never had to use any kind of mobility aid like crutches or a walker. On that same note, people with cerebral palsy use up a lot more energy doing everyday tasks than “normal” people, like walking or going up a flight of stairs, so I often get tired really easily and get pain in my knees, ankles, and feet if I’ve been walking for a long time, but if I stop and take a quick break I’m usually fine. It’s also a little difficult for me to bend down to reach things on the floor or to tie my shoes, but I’ve found my own little tricks and alternative ways of doing things and they work just fine for me.

Vin: What I have is called arthrogryposis multiplex congenita, or AMC for short. It’s a rare muscle and joint disorder that affects mainly my hands, wrists, elbows, hips, and knees. I’m not able to bear any weight on my left leg, so even if I did wear a prosthetic leg on my right leg I probably wouldn’t be able to walk, so I use a power wheelchair to get around. Even though I can move all of my limbs, I’m basically a quadriplegic - I need assistance a lot of daily tasks, like taking a shower, going to the bathroom, cutting my food when I eat, and getting dressed. I also need to use a lift to get in and out of bed.


Miggy: I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. What was life like for both of you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for special needs moms in dealing with these sort of situations?

Sara: Like I said before, when I was growing up I never thought I was different from any other kid because I wasn’t treated like that at home. When I got to school, I didn’t understand why kids would ask questions about my braces or the way I walked, or why I would be left out or be teased because of my disability. A lot of the time I thought, “I don’t care about my disability, my family and friends don’t care about my disability, so why can’t everyone just see past it and be my friend?” I was bullied, probably not as much as some kids with a disability, but it did happen for a few years. It really ruined my self-confidence and the way that I think other people see me. For all the moms who are reading this that have kids with special needs, the best advice I can give you is, if your child is getting bullied, even if it doesn’t seem like something significant or important to you, do not belittle them or make it seem like their problems aren’t important, because even if it doesn't seem important to you, it could be the end of the world to them.

Vin: I was teased and bullied a lot when I was in middle and high school. It really hurt my confidence, I had a lot of trouble making friends and being social for a while. I’m going to be blunt here, it was mostly because of the fact that I have one leg. College was really a fresh start for me, being with new people and people who were more open and mature changed that for me. I feel that moms who have kids with special needs really need to promote their child’s self worth and self confidence, because it can really make a difference for them and make them feel like they belong and that they aren’t weird or a burden.


Miggy: I've written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren't her physical limitations, but the limitations that come from society and from people who think of her as "a poor thing" or who "feel bad for her." I'm curious if you agree that physical limitations are smaller problems than pity and the way the public sometimes views the disabled community.

Sara: I definitely agree with this; I come into contact with people who pity me on a weekly basis, but I feel like they are people who don’t really know me, because anyone who knows me knows that there is no reason to pity me. I really think that the general public’s views on the disabled community are very antiquated. There’s people out there who still believe that people with disabilities inherently have a lesser quality of life than “normal” people, who think people with disabilities should be institutionalized and separated from the rest of the world. We are a minority, and our voices carry just as much weight and deserve to be heard just as much as anyone else’s.

Vin: Pity is definitely becoming a big problem and concern for me as I enter the “real world” and begin my career in aviation. I’m really worried that when I’m working that people will not take me seriously and belittle me because of my disability. I’ve come into contact with people who pity me constantly, if I’m out at school or at the store, pretty much anywhere I go. I always overhear people say things like, “That poor guy, he’s in a wheelchair”, or “Good for you!” I try not to pay attention to it and let it bother me though.

Miggy: Like a lot of millennials you guys met on Tinder! What do you want people to know about being a disabled couple? Are there extra challenges--socially or otherwise--or benefits that people might not see at first glance?

Sara and Vin: The main thing I’d like people to know about being a disabled couple is that there isn’t much of a difference between disabled couples and able-bodied couples; we do many of the same things that able-bodied couples do, like going out for dinner, going to the movies, going to concerts, going to hockey and baseball games, and even going to the beach! We also both play on a sled hockey team called the Roughriders, which is a lot of fun and a great way to spend time together.

Being disabled was the first thing that really connected us, it was something we had in common and could talk about candidly with each other. Before meeting Vin, I only knew a couple people (including my sister) who were also disabled and with whom I felt understood what I was going through. Since meeting him, and also meeting the other guys on the hockey team, I’ve become more comfortable in my own skin, more self-confident, and more comfortable talking about and in my identity as a disabled person.

As you’d expect though, being a disabled couple does have its challenges. Like I said before, we come into contact with people who have antiquated views of people with disabilities and with people who pity us because of our disabilities, and many of those people also take our relationship a lot less seriously because we’re disabled. Because we’re disabled, there’s people who think our relationship isn’t “real” in comparison with two able-bodied people who are in a relationship, but this is 100 percent real.

Like any other couple, our relationship isn’t always easy, but there are extra things that we need to take into consideration because of our respective disabilities. Vin is at his most independent when he’s in his wheelchair, and even then he needs a considerable amount of help doing things that able-bodied people, and even myself until I met him, take for granted, such as opening a water bottle, getting dressed in the morning, and going to the bathroom, among other things. I’m going to be honest here, going into this I never thought I would be dressing my boyfriend before a night out, or helping him go to the bathroom, or adjusting him in his wheelchair, but I’ve taken it all in stride and helped him with whatever he needs. I think I’ve been so comfortable doing all of these seemingly awkward things for him because I’ve had to help my sister with similar things, like tie her shoes for her and make her lunch. It’s never been a big deal to me. Everything I do for him is to make life easier for him and because I love him.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Vin: I have a lot of funny stories actually. I’m constantly poking fun at my disability and being self-deprecating. One of the best though has to be when I was on a flight from New York to Florida. We were getting off the plane, and I was getting pushed off in a manual chair. When I approached the front of the plane, the stewardess asked me if I had enjoyed my flight. I said yes, and looked down in a panic at my legs. I said, “Wait, where’s my leg?!” The look on the stewardess’ face was priceless, she actually thought my leg was back in New York!

Miggy: Living with a visible disability has unique challenges, in an ideal world how would you like people to approach and/or respond to you? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Sara: The thing I want most in life, and I think this has come about more as I’ve become an adult and started to enter the workforce, is to be taken seriously and not treated like a child because of my disability. I’ve gone through school and done everything I’ve done without any kind of special treatment; I work just as hard if not harder and am just as knowledgeable about things in my field of study than an able-bodied person in my position.

Vin: People come up to me all the time and ask me what happened to my leg, or they thank me for my service because they think I’m a veteran. I don’t really mind it, I usually tell them it was bit off by a shark or something crazy like that just to mess with them. I’d really like people to treat me like any other person, disability or not.

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Vin and Sara, thank you so much! You are the first couple I've featured here on the spotlight and I'm so grateful to you both for sharing your perspectives. I think one thing you both highlighted was how most people still have antiquated ideas of disability and you still run into this on a consistent--even weekly--basis. As Vin pointed out this is becoming even more concerning as you are entering adulthood. The fact that you even have to point out that you hope to be taken seriously in your fields of study--as you should be--speaks to the level of discrimination you and other people with disabilities face every day. And it is so real. The unemployment rate for people with a disability is more than double than it is for the non-disabled. In fact,while many things have improved since the ADA of 1990, the employment rate has actually dropped for disabled Americans since then! As has the wage gap. While it is illegal not to hire someone based on gender, race or religion but as this article points out some employers will outright say, "Sorry, we don't hire blind people" even when this person has worked in the field and is competent for the job. That's discrimination! But unfortunately we don't seem to recognize discrimination when we see it when it comes to the disabled. Vin and Sara, I'm so glad that you shared your story and your life with us--it's important that we see disabled people in relationships, going to college and getting jobs. I know how hard it can be to pull those able-bodied blinders off as I once had them on myself, but there are so many of us who will continue to do so so that the world is not just accessible by ramp, but also by opportunity. Thanks you guys and best of luck to you!

As always if you or anyone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend everybody!
XO, 
Miggy

3 comments:

  1. What a handsome couple!!! They really look cute together.

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  2. Anonymous12:17 PM

    I recently watched an episode of Returning the Favor on facebook that featured the Rough Riders. Glad to put a face to some of the team members.

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  3. I loved "meeting" Vin and Sara!

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