Samuel’s story

Margarita Lopez lives for days like this one — when son Samuel Saez is not crying, when he responds to her caresses, when he seems to know what’s going on around him. There aren’t many of these, but enough to keep her going.

“You learn to treasure mornings like this,” says Lopez, 44. “You thank God for them”

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“You have to love your children however they are,” she adds. She bends over Samuel and coos to him, “Isn’t that so? Isn’t that so?”

Samuel lifts his head, bobbing to and fro and searches for his mother’s voice.

HOW TO HELP

My Wheelchair Doesn’t Define Me!

Erin M. Kelly is a writer with Cerebral Palsy who wants to be recognized for her work rather than her disability. She’s a graduate of Penn State Altoona and a columnist for The Altoona Mirror and GoodMenProject.com. Writing is her window to the world and gives her the opportunity to bring what’s inside out.

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“It casts a shadow that’s bigger than my body. It has left scars that run deeper than my flesh and bone. It haunts me–but I know I wouldn’t have the life that I have without it.

My wheelchair is–by its simplest definition–an object. It’s a thing that holds me in place, whether I want to be held in place or not. By its most complex definition, however, it gives me a kind of freedom and responsibility that most don’t have. Yet, it’s the farthest thing from who I am.

I’ve never really stopped to ask myself, “How can this thing–this huge object–be such a part of my existence that it consumes me?”

That question is as valid as they come, one that any person in their right mind would ask. I’ve just never thought of it as something that gives me any credibility as a person, daughter, sister, niece and friend. My cerebral palsy didn’t weigh on whether or not I got those roles as a kid–and every other role I’ve accepted since.

I was raised to have more dignity than to see myself as a doll with a set of wheels. I’ve also never wanted to allow myself to get to a point where I believe it’s OK to define myself by my wheelchair–or my CP. I’ve been under a cloud of doubt my entire life because of what my chair represents–my cerebral palsy. Just by virtue of that fact, I feel I have a responsibility to show people something other than what’s expected of me. It’s not to get them to change their minds about me on a personal level. It’s rather to give them a new set of ideas to think about when it comes to people with disabilities.

I decided to become a writer largely in part because of my circumstances. I began to notice that my wheelchair was the only thing people saw, and I wanted to change that. I was only a kid at the time, but I made a promise to myself that if I was meant to have this certain deck of cards, I might as well do something with it.

While I wouldn’t call my work or my ability to write “magic”, my chair has become a constantly loud reminder that disability is just as much a social justice issue as rape or sexual abuse is. Again, it was the urge to do something that motivated me to rise above my circumstances. I wanted do my part to try to raise awareness about disability issues and give a voice to a demographic that has long been kept in the dark.

That process lessened the emotional weight I’d put on myself due to my chair. It instead shined the spotlight on the big picture for me as a writer: that the disabled are a part of the global demographic that’s being beaten, broken and abused. I can only hope my work has done the same for those who have taken the time to read it.

I think the fact I’ve had an opportunity to get my work out there is a testament to helping people change. If my written words are enough to create the smallest change, I can go to bed with a smile on my face.

It’s ironic that Social Justice was never something I was particularly interested in. It just progressed to that point over the past few years and I’ve learned more than any textbook could teach me along the way.

It took me a long time to “see the light”, but I now realize that a person is a person no matter what they look like in a mirror or how the media presents them to the outside world. So, I try to look at my chair and the “baggage” that come with it as symbols of strength rather than what they truly are.

I’ve learned that having that perspective doesn’t make me careless or ignorant to the fact I have a disability. It makes me think realistically about where I’ve been and where I’m going in life.

To that end, I think there has always been a part of me that feels as if I’m inadvertently giving in to my cerebral palsy if I call too much attention to it. I sometimes feel I don’t need to in a realistic, somewhat surreal way because people can see it with their own eyes. However, I know my chair plays a big role in that by default, and that’s where I try to fill in the blanks.

There’s a very distinct stigma comes with having a disability. By the same token, there’s also a certain degree of dignity to the way one chooses to handle a disability.

If I didn’t have that piece of mind, I don’t think I’d be where I am today. I wouldn’t have a reason to rise above.”

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16 years old with CP paints Taylor Swift

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Involving young people in decision making!

Vote for Heel & Toe!

Please, vote for Heel & Toe to win £1,000 for their kids!

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EKSO Bionic Exoskeleton

“… a study from the Kessler Foundation has shown that the electronic suit is safe and effective for gait training of stroke patients. The suit can be programmed to assist the patient in a variety of ways, including setting how much power it adds to the wearer’s own strength and the amount of time before it kicks in at every step.”

 

EKSO-G4

 

 

What do you think?

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Conductor steps! :)

Just a normal working day!

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I have counted my “conductor steps” today in work with a pedometer.

5519 steps in 5 hours working in the Peto Institute.

Impressive, isn’t it? :)

If you have a similar device, join me and count your conductor steps on a working day! :)

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