Friday, March 03, 2017

Special Needs Spotlight || Karin

Karin Willison is a writer, blogger, and advocate who has cerebral palsy. She works as an editor for The Mighty and has a blog at FreeWheelinTravel.org, where she chronicles her experiences living and traveling with a disability. Karin lives in the Midwest USA with her 4 dogs, including service dogs Aria and Daisy.

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Miggy: Hi Karin and welcome! Thank you so much for participating in today's special needs spotlight. I came across a piece you wrote for The Mighty and just had to track you down! I'd like to start at the beginning. You have Cerebral Palsy--at what age did you first become diagnosed? What age do you first remember becoming aware of your diagnosis and how you were different from other kids and can you tell us about that?

Karin: I was diagnosed at 6 months old, but my mother suspected something was up almost from the beginning, because of the problems during my delivery (emergency C-section, and I wasn't breathing) and my stiffness/lack of movement. She was a teacher for children with learning disabilities, so she was very familiar with human development, and had a pretty good idea of what she was looking at before the official diagnosis.

I can't remember not being aware that I have a disability. My parents explained it to me in an understandable way, and they were always willing to answer questions about it. I have vague memories of going to preschool with other disabled children, and clear memories of my mother saying I would be going to a new preschool where I would be mainstreamed. She made sure I understood that I had the right to be in the same class as children without disabilities.


Miggy: I'm always curious to hear from adults what their family experience was like and how it shaped them as a young kid. Can you tell us what your parents were like and what sort of support you had at home? Is there anything you feel they did particularly well in raising a daughter with CP? Anything you wish they would have done differently?


Karin: My parents were very supportive. If you have watched "Speechless," my mom was a lot like Maia, minus the British accent. She was very tough and always ready to stand up and fight for my rights.

My dad is the quieter, more easy-going type, but he has always been there for me. He built a lot of my adapted furniture, like prone standers and back supports for tricycles. He worked very hard and stayed with the same company his whole career so we would have good insurance to help cover my needs.

My parents were/are wonderful and I feel extremely fortunate to have grown up with them, especially when I see other people with disabilities whose parents wouldn't or couldn't do as much to help them succeed in life. I will always be grateful to them. My mom was my role model, and I still aspire every day to be as tough as she was. However, underneath her tough exterior, she carried around a lot of grief about my disability for many years. She was determined to "fix" me with constant, intensive physical therapy and visits to specialists all over the country. She meant well, but I felt bad for not improving physically as much as she wanted, and because deep in my heart, I didn't want to be fixed. I just wanted to be accepted as I am. So that aspect of my childhood was very difficult.

When I was a teenager, my mom started getting involved with the disability rights movement, and became friends with adults who had disabilities. She began to see that I actually could have a good life as someone with a significant disability, and that society is what needs fixing, not me. Our relationship improved significantly, and we became much closer, but unfortunately she passed away from cancer when I was only 22. I was devastated, and I still miss her every day.

Miggy: I'd love to hear your thoughts about accessibility from the point of view of a travel blogger who is also a power wheelchair user. As a disabled adult, living on your own and road tripping around the globe, what is your day-to-day life like? Is accessibility a struggle. What would you want able-bodied people to understand about accessibility?

Karin: Well, for starters, I don't travel all year round. (I wish!) I try to take at least two big trips per year and a few small ones. I find dramatic variations in accessibility depending on the city or state. For example, California in general is very accessible. Since there's always so much construction and development, most buildings are new or have been renovated since the ADA. They do a good job enforcing the laws as well. I lived there for 20 years and rarely bothered to call to see if a place was accessible before going out. It almost always was. It was nice not having to think about that stuff all the time.


Now I live in the Midwest, and the small city is fairly accessible, since they have a strong disability activist community (thanks, Mom!) But the overall state is a mixed bag. The two surrounding states are better for physical access. The East Coast has the most serious problems, especially New York City. It's my favorite place to visit, but also the least accessible, and it's incredibly frustrating when I can't go to concerts because there are steps to get into the venue.


Miggy: I've written a few posts about the problem with pity 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 accessibility and physical limitations are smaller problems than pity and the way the public sometimes views the disabled community? I know that you've mentioned in particular the trouble you have finding full time, employment. In my opinion, pity and the lack of exposure we have in the media to people with disabilities all play a part in creating stumbling blocks for people with disabilities to have the same opportunities as their able bodied counterparts. Sorry, not really a great question but do you agree, disagree? I'd love to hear your thoughts in general on all of this!

Karin: I think they are intertwined, so it's impossible to say which problem is worse. Non-disabled people tend have low expectations of us, and don't expect to see us out in the community living and working as they do. Since they don't expect us, they don't prioritize access. Then we can't get in due to lack of access, so they don't see us and it just reinforces their belief.

As far as workplace access, it's mostly about stigma. When I graduated from Stanford, I applied for numerous jobs in the Los Angeles area, and got several interviews. But their interest in hiring me magically disappeared after I showed up to the interviews in my wheelchair. Still, I have gotten a job every time I've looked… It just sometimes takes me longer than others. 




I think the biggest factor is education. If you have a physical disability, you absolutely must go to college. All the good jobs we can do require a college education. The people I see struggling are those who are very bright but don't have the piece of paper to back it up. I wish employers would take skills and lived experience more into account, but for now, the system is what we have to work with. And I feel that college is also essential for social development and helping us find our identities. For me and many other people with disabilities, middle school and high school were a nightmare, but college was the opposite, a time of growth and an opportunity to find friends who truly accept us.

Currently, I have a great job. I'm an editor at The Mighty, with a focus on disability stories. When someone submits a story for publication, I decide whether to accept or decline it, then edit for content and structure (spelling, grammar, etc.), add photos and publish. It sounds simple, but there's actually quite a lot to remember and think about, especially in terms of editing out problematic content, such as inappropriate details written by parents about their children with disabilities. We often have to walk (or roll) very fine lines, and it's not easy. But it's tremendously rewarding. In addition to editing, I manage the disability category Facebook page, and consult on disability issues with other employees/departments such as video and nonprofit partnerships.

I work from home, and I follow a Pacific time schedule even though I live in the Eastern time zone. Although I have and probably could still work in an office, I'm able to be much more consistent by working from home because I don't have to get up as early, and I can take breaks to stretch my muscles or answer important calls about my medical and disability situation. That means I sometimes work late into the night to complete all my hours for the day, but I'm a night owl, so it's OK.


Miggy: Another thing you've written openly about was the time you were attacked in your own home during a home invasion robbery perpetrated by a former care giver and her boyfriend. You were targeted specifically because you are disabled, and by someone who was in a position of trust. The media doesn't spend a lot of time talking about people with disabilities being targets for violent crime and other forms of abuse, but it's very real. Is there anything you wish to say about this experience either on a personal level or in the broader perspective of people with disabilities being targets for crime and abuse?

Karin: First of all, I never thought it could happen to me. I'm also a domestic violence survivor, and I thought that couldn't happen to me either. I was raised in a stable, well-off household with parents who taught me self-respect. I was always careful about who I hired. I suppose I always expected that people would take advantage of me at some point, and I'd dealt with items being stolen and a check forgery incident in the past. But violence? I never would've seen that coming, and especially not from that caregiver. She was a quiet type... but sometimes they're the ones you have to watch out for.

My advice to protect yourself/your family is to take precautions. Install security cameras outside and inside your house and make sure all your employees know they are there. Keep cash and checks locked up. Get a smart lock for your door, which allows it to be opened via an app instead of having to give keys to people. It's easy to remove employees after they leave, and the system records who is going in and out. Try to hire people via personal referral as this makes them more accountable. They are less likely to steal from or hurt someone after a friend recommended them for the job.

For some reason lots of weird one-in-a-million things happen to me. I just wish one of them would be winning the lottery. Of course, it would help if I bought tickets.


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 due to your special needs situations?

Karin: Oh wow, I have so many. Most of them involve my wheelchair getting stuck in some way. Recently I went to a local cupcake bakery for one of those emergency PMS days and my wheelchair got tangled in their carpet runner. We had to transfer me out of my chair and a few people had to lift it off the ground to free it from the rug!

I was also rescued by the Queen's guard during a Renaissance fair. I got stuck in the mud and literally had chivalrous knights and noblemen coming to my aid. I got some video and it was pretty funny!


Miggy: I'm wondering if you could speak to the special-needs-parent vs. person-with-a-disability gap a little bit. For example, are there some common issues that adults with disabilities see in the special-needs-parent perspective? In my view, there will always be a gap there because most of us don't know what it's like to be disabled and that's OK! We're all learning and like you're mom we love our kids and we're doing what we know best. But as Oprah says, "When you know better, you do better." Is there a piece of advice or something else you want us special needs parents to do so we too can "know better?"

Karin: OK to start off with… and I hate to have to mention this one given the title of your blog/this series, but a lot of us really don't care for the term special needs. I personally feel like it's a euphemism for disability and really not necessary. It also contributes to the word "special" being used in mocking terms rather than positively as it should be. "Oh those are the 'special' kids over there.." Disability is not a four-letter word… Just say it.

However, I also recognize that special needs is a very commonly used term and not easily removed from our lexicon. People (including you, I'm guessing) have strong identities as "special needs parents" and I have to admit "parent of a child with a disability" doesn't flow as well. It also may not speak as much to parents whose child does have a disability as defined under the ADA but may not be perceived as disabled, for example a child with a life-threatening food allergy. Special needs is more of an umbrella term… but everything under that umbrella actually is a disability. I won't say I never use the term, but I have been actively trying to replace it in my language whenever possible, and when I edit articles as well.

With all that said, I don't think terminology is the biggest issue. The most problematic thing I see parents doing is posting inappropriate amounts of detail about their children in blogs and other public forums. Talking in detail about potty training problems, behavioral issues, meltdowns... to me it is a violation of children's privacy. Many of these kids are going to grow up and their friends and colleagues could Google them and find this information. If their Mom wrote in detail about how they were wetting the bed at age 10, that's going to harm them professionally, socially, and emotionally. It makes that embarrassing baby photo your parents showed your first boyfriend seem mild in comparison!

Even if a child has significant cognitive disabilities and may not be able to read a website in the future, they still have the right to privacy and dignity. It's often possible to discuss sensitive issues without going into embarrassing detail, but when it's not, those conversations are best taken to email or other more private forums where parents can post under a pseudonym. I understand that parents need support and can help each other by discussing these topics, it just needs to be done in a way that protects their kids' privacy.

The third and final piece of advice I would give to parents is not to say "My child will never..." You don't know that. Kids with physical and developmental disabilities are growing up to achieve so much more than they did in the past. Please keep your expectations high for your child, yourself, and everyone in your family's lives. If anyone says your child will never do something, or you should give up on them, that person does not belong in your life.

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?

Karin: I just want people to treat me with the same respect they would give anyone else. I want to be seen as a hard-working, capable, professional woman. I truly believe that would resolve 90% of the problems I deal with as a person with a disability.


Miggy: As someone who has been a disabled and a wheelchair user all your life you probably have a unique point of view on life and see things from an angle many others don't see… Is there anything else you want people to know about you, your life or disability in general? If you could give any advice to a mother whose child will have CP and be in a wheelchair what would it be?

Karin: I have a good life, and I value it as much as anyone without a disability values theirs. I've written a whole article on how parents can support a child with cerebral palsy, but it all comes down to one thing: have hope. Your child has abilities and can live a great life just like everyone else. Treatments and therapies have their place, but if you focus too much on "fixing" your child, it may just make them feel worse about themselves. The best physical therapy is getting them involved with the same activities as other kids, like sports, horseback riding, and dance.

Help them choose the right mobility options for maximum independence. Many parents focus on walking because they don't want their child to use a wheelchair; they have absorbed society's message that walking is always better. But a child who walks slowly and/or falls a lot can end up missing out on life opportunities. Of course it's good for kids to walk when they can, but I believe it's best if they also have a wheelchair, preferably a powered one, for long distances so they can keep up with their peers.

Don't let your child be segregated in a "special" school or classroom. Support your child's intellectual development so they can go on to higher education and a good job. Do not just rely on school to educate them -- get them reading for pleasure, sign them up for science camp, or art classes, or whatever their talents may be.

Encourage them to express themselves through writing -- it's much easier today with all the various software and technology out there. I believe we help the world understand us better, and learn more about ourselves, by sharing our stories. And if you ever need someone to talk to, if you ever need advice, please feel free to contact me. It sometimes takes me a while to answer emails, but I'm always happy to help if I can.
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Karin--thank you so much. This was fantastic. I am continually grateful for the disabled adults who share their life experiences with me and my readers on TLM. You have a perspective that I will most likely never have, and therefore one that is invaluable to me raising a child with a disability, who will one day be an adult with a disability. There was such valuable information in every single answer that I've read and re-read your interview a few times now. The things that really stand out to me: your mom. What a rock star. I'm so glad you had someone like her (I loved the Maia comparison by the way!) in your life. However, I'm also glad that you talked about the years she spent trying to "fix" you. I think this is a very natural mindset for most people and I definitely went through shades of that as well. (You mentioned walking...yep that was definitely a thing for me at one time, but I got over it.

And yes, I totally understand about the term "special needs" as well. But like you said it's the best umbrella term I know of and the best one fitting for this series. But what you said is absolutely true about people being afraid to use the word disabled--it's not a 4 letter word and it's important to let people know that. I really do use them interchangeably. Additionally, I love your advice to parents on raising a child with disabilities--yes to powerchairs (high-fives!), no to segregated schools, and yes to getting them involved in regular, kid activities. Thanks again Karin for sharing the good, the bad and the in between. Best of luck to you!

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend!
XO, 
Miggy

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4 comments:

  1. What a great spotlight! I couldn't help but wonder, do Daisy and Aria work together or take different shifts?

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