Speed: The Fallacy of Conformity

Hello Everyone,

I hope your week is ending on a beautiful, purply note! As some of you may have noticed, I have been publishing new posts less frequently the past few months.  This is because I have had a few new opportunities appear unexpectedly. These opportunities have siphoned some of my time from my blog. So, I have decided to take a hiatus from blogging for a while. However, I will leave my past blog posts up until my return. Below is my last post for now. As always, may you all be surrounded by purply blessings!  😊

Love and blessings always,

Allison

 

Growing up, I had years and years and years of speech therapy which was quite effective. When I started speech therapy, few people outside of my family and close friends could understand me and even they had difficulty at times. But, after several years of speech therapy, people can now understand me relatively easily on the first try.

There is just one exception to this: telling a joke. I can always say the setup of the joke just fine, and everyone understands me. However, when I am about to say the punch line, I always start cracking up laughing to the point that I am bright red and can barely speak. At this point, I usually look around to see absolutely befuddled looks on the faces of my audience. I take a deep breath, stop laughing just long enough to get out 2 or 3  words between peals of laughter and then it’s over. I am cracking up again and my family and friends are just laughing, shaking their heads and asking each other, “did you get that?’’ They are laughing, not because the joke was funny(because, after all, they still don’t know the punchline), but because I am laughing so hard that they can’t help but to laugh. Aaahhhhh, the joys of having CP speech and  a sense of humor!

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In the arms of my Michael

Michael Jackson has been a part of my life for as long as I can remember. I was introduced to Michael as a preschooler through the song, “Beat It.” I loved that song so much that I sang it all the time, and I do mean all the time. Now, I was only 4 years  old so when I say “I sang that ‘song’, ” I mean that I  sang 2 words. I’m fairly certain you know the two words … “beat” and “it.” But, I sang those two words with every bit of emotion my 4-year-old body could muster. From  the time I woke up until I went to bed for a few weeks, I sang “Beat It” at the top of my lungs.  My family, though, was very patient and understanding about my enthusiastic, if somewhat limited, musical musings. As my sister said one day, “we always knew where you were. We just followed the words ‘beat it’ until we found you.”

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Need some perspective? Try skiing!

Hello everyone!

I’m back! In case you were wondering, I have not abdicated my purple, blogging chair on wheels… The end of 2015 was filled with many health-related surprises that led to emergency surgery. Ringing in the new year recovering from anesthesia is definitely one way to spend the holiday, but I think I’ll make different plans for next New Year’s Eve!

I’d like to thank everyone for their support through 6 of the most challenging weeks of my life. Whether you prayed for me, sent emails and texts to check on me and buoy my spirits, dropped everything to stay with me, sent beautiful purply items to keep me warm,  galvanized your faith community to pray for me, gave me copious hugs or kept me laughing through some frightening moments, I felt the power of your love and I am grateful to, and for, each of you! May you all be surrounded by purply blessings! 😊

Love and Blessings Always,

Allison

 

Without further ado, here’s today’s post…

I absolutely love to ski!! One of the few things I love more than skiing is telling people I ski and seeing the looks of complete befuddlement on their faces. Usually, people get these looks for one of two reasons. One, they have just met me and cannot fathom how I ski. I can usually see the conversation going on inside their heads… “How do I politely ask Allison ‘how in the world do you ski given the fact that your balance isn’t the best and your arm control leaves a bit to be desired?!’ ” Or, two, if they know me, the fact that I participate in adventure sports is no surprise. The surprise to them is that I willingly sit outside, in the freezing cold, and call it fun. The reason this comes as a surprise is because on more than one occasion in the winter, I have had the following conversation in my apartment …

Continue reading Need some perspective? Try skiing!

No wheelchair, no problemo… We have another set of wheels for you!

I received my first wheelchair when I was 10 years old. Before that magical day, I got around using a variety of methods. If I was going a short distance, I walked with a walker and braces, or with crutches, and for a while, I was able to walk unassisted. If I was going a longer distance, my family and I got pretty creative. My absolutely favorite option was having my dad pick me up and sit me on his shoulders. I went from being 4 foot something to being over 6 feet tall in a blink of an eye(my dad is 6 feet tall). I got to play in his hair and ask him questions such as, “Dad, would you ever get a Mohawk?” When my dad wasn’t around, I would either use a rental wheelchair or would sit on a bench. These were the customary options until one particular visit to my mom’s family.

Continue reading No wheelchair, no problemo… We have another set of wheels for you!

CP: Disability and Spiritual Practice?

Can simply living with a disability be a spiritual practice? Although I have talked about having CP generally, I have yet to explain how my CP impacts my physical abilities. Due to my CP, I have always had to tap into a high level concentration to complete any task requiring muscle coordination. You may be thinking, “Doesn’t every physical task require some level of muscle coordination?” In one word… Yes. I use a motorized wheelchair, have less control of my hands and arms and work hard to speak clearly.

Like many with disabilities, I have adapted my lifestyle to fit my abilities. In the words of one of my favorite comics, “When life gives you a wheelchair, make lemonade… You know what I mean!” I love to ski, windsurf and ride horses. I have traveled internationally and have a wonderful community of family and friends. Some say I have accomplished these things despite my CP. Over time, I have become comfortable telling these people that I have accomplished these things, in part, because of the lessons and worldview my CP has given me.

However, recently, I have come to have a more expansive understanding of my CP. Yes, I have learned lessons as a result of having CP, but now I am beginning to understand my CP to be my greatest spiritual practice. When this thought first crossed my mind, I was both startled and liberated.  The disability advocate in me was confused and resistant to this concept; but, in the midst of that confusion and resistance, I was curious.

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Abstract painting of world. The words world cerebral palsy day 7 oct. 2015 are on the right side.

Happy World CP Day!

Surprise… I am posting on a Wednesday! Today is World CP Day! YAY!! I decided to celebrate by coming up with my “10 Reasons I Love Having CP” List.

10. Palsy begins with the same letter as- you know what’s coming- PURPLE!!!

9. Before my speech became pretty easy to understand, I spelled out words when I spoke to people who couldn’t understand me. This led to me becoming such a wiz at spelling that I won several Spelling Bees in elementary school.

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To special school, or not to special school? What a gift it is to have the choice!

As a new school year commences, I am reminded of my years and years and YEARS of education. When I say I am a strong advocate for both special schools, which are schools for disabled children only,  and inclusion(inclusion is enabling students with disabilities to attend regular public schools by providing whatever support systems the child needs to succeed in a regular education classroom), people often gasp and say, “You, a staunch proponent of equality, equal access and a fully inclusive society, support special schools! Well, I never!” Ok, maybe the response isn’t quite so dramatic, but the surprise is palpable. Yes, I support the option of multiple school settings because one size does not fit all children, and one size may not even fit the same child for the entire duration of their academic career. Believe me, I know… I was one of those children.

Many are quite surprised when I tell them that I went to Sunbeam School, a school for disabled children, through second grade. When I ask why they are so surprised, they often say that I am so self-confident and independent that they assumed I attended a “regular” school for my entire educational career. I say yes, I am self-confident and independent now, and I am pretty sure that I was born with that spirit. However, developing those skills as a child depends on having people around you who help you hone those skills. While my parents and other adults helped me to hone those skills outside of school, my teachers at Sunbeam reinforced those lessons throughout the school day.

Continue reading To special school, or not to special school? What a gift it is to have the choice!

Blazing trails at the Olympics or in academia…

When I was little, I absolutely loved anything having to do with speed. Whether riding my bike as fast as possible, having friends run as they pushed me in my wheelchair or blazing down a ski trail, nothing excited me more than going at top speed(in the interest of full disclosure, I STILL love going at top speed)! This is probably why I also loved watching sports where speed was the ultimate goal. I use the term “watch” loosely because watching generally meant that while a sport was on t.v., little Allison would cheer loudly for the person she wanted to win, jump up and down on the couch and stomp her feet in sheer excitement to will her chosen athlete to victory. By the time I was done “watching” these sporting events, I was so out of breath you would have thought I was the one competing!

One of my favorite sports to “watch” was track. And I especially enjoyed watching the track events at the summer Olympics. One summer afternoon, I was watching the Olympics and rooting for the track star, Flo Jo(I loved her nails!). After watching some of my other favorite track stars win their events and receive their Olympic medals, I had an epiphany.

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NEWPORT, HERE I COME… AGAIN!

After completing my first year of graduate(grad) school, I had a wonderful group of friends in the same academic program as me. We were all elated when the last day of finals came and we had all survived the most intense academic year of our young adult lives! That first year of grad school had been so crazy that I had gone a full 8 months without watching 1 minute of tennis. For those of you who I have yet to meet, me going without tennis is like me going without *gasp* purple… simply unheard of! So, once summer vacation commenced, I began looking for tennis tournaments near campus that I could attend. The closest tournament I found was in Newport, RI. I had never heard of Newport, but figured that any town cool enough to have a professional tennis tournament was cool enough for me! Boy, was I right!

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“This is the happiest thing I’ve ever seen!”

One of my favorite aspects of having CP is ascribing to disability culture. Now, I know some of you may be thinking, “Did I read that right? Disability culture? There are many words that come to mind when I think of disability… but ‘culture’ is definitely not one of them!” Well, join me and my community for a moment.

Yes, we have a culture and a part of our culture that I thoroughly enjoy is our dances. We have dances at so many events- everything from summer camp for disabled kids to conferences for academics in the field of disability studies. We firmly believe that there is room for everyone on our dance floor. Indeed, each individual’s experience is enriched when everyone dances their dance in whatever way they can. Having grown up immersed in disability culture, I forgot how special this is until I saw one of our dances through the eyes of two of my non-disabled friends.

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