Hope

Hope seems to be a common theme at the moment, and two great sites can offer you some sources: Hopeful Parents (where you can currently find a great post by Mama Mara, about her autistic teen, Rocky), and Gives Me Hope, a website with user submitted stories about events or people that give them hope.

So I thought I would share with you an event that happened today that gives me hope.

I was at a friend’s house watching the newest Star Trek film (the one with the Spock-kiss and the adorable young Chekov). There were four of us gathered, the other three being rather close friends of mine. We had reached the scene near the end, which has Admiral Pike sitting in a wheel chair being pushe around by an assistant. I wasn’t even one processing the scene when I heard the rustle of agitation from the couch across the room. When I asked what the fuss was over, one of them pointed out that several centuries in the future physically disabled people should not still have to rely on assistant-propelled wheelchairs to get around. With all the other inventions, there should be a strong focus on making sure we’re creating technology to improve the lives of all people, including the disabled. There were grunts and nods of agreement from the rest of the couch.

None of those friends are physically disabled, or even have close relatives who are. However, even without a direct personal connection to the topic, they remain aware of and passionate about raising interest in improving the lives of people with disabilities. And that gives me hope.

Here are a few other posts I’ve written about Events or People that Give Me Hope:

• “The Break Room”
• The Letter
• The Neighbor
• My Brother
• My Grandmother
• The Classmates

An Article on Fundraising for Autism Awareness

Here is an opinion piece I am planning on submitting to my campus’s newspaper about an autism fundraiser we had this weekend:

Last week (my school) College’s service fraternity (name) raised over $7,000 for the Autism Outreach Center of (region). This was quite a feat, and I applaud them for it. However, I take issue with the banner displayed at the Dance-a-Thon which could be classified as misleading.

Before I address the poster specifically, here is a bit of background on autism. Autism is a lifelong developmental disability that is typically diagnosed before a child’s third birthday. Autistic individuals have difficulties with communication and socialization and often have sensory processing and attention problems as well. Many use repetitive movements to calm themselves and require a precise routine to complete life tasks like bathing, eating, and going to sleep. Roughly one percent of the population exhibits an autistic spectrum disorder which includes Asperger’s and PDD-NOS.

The largest sign at the fundraiser had the Dance-a-thon’s Slogan which went something like: We have to SHAKE it up because a cure may be just around the corner. This reflects the title of the cause, “Students Helping Autistic Kids Excel.” The issue is not with the clever title, but with the use of the word “cure”. Autism is incurable, not because a cure hasn’t been found, but because there is no possibility of a cure. Autism is not a disease like cancer or pneumonia, but a distinct neural anatomy. The brains of autistic individuals have structural and functional differences from those of non-autistic peers, and no amount of vitams, chelation, or hyper-baric oxygen treatments will change that. Moreover, when surveyed, most parents of older autistic children say that would not want to “cure” their child of autism, and the majority of autistic adults would also declare that they were not interested in a “cure.”

The fact that a “cure” is impossible and unwanted is not a reason to stop fund-raising for SHAKE however. It is merely a reason to shift the focus away from the scientists researching an impossible cure and onto autistic individuals and their families that do need assistance. Instead of donating in the name of autism so that a cure may one day be found, choose one of the following reasons to donate:

-so an autistic child who cannot speak can be supplied and taught a different way to communicate

-so an autistic adult who has difficulties with blocking out loud sounds can be purchased

noise-canceling headphones

-so that videos designed to teach autistic adolescents social skills can be offered as a resource

-so that workplaces can be developed that can minimize the challenges to tap an autistic employee’s full potential

-or any other methods which will improve the lives of autistic individuals.

The Autism Outreach Center of (region) fulfills (club)’s mission of helping autistic children excel. But this goal of finding ways to help children with autism to reach their full potential should not be confused with developing a “cure.” Autistic children will become autistic adults, and by donating to SHAKE you helped ensure they have the supports they need to succeed.

What really happens when the blind lead the blind?

Think back for a moment and consider if you’ve heard either of these phrases for a moment:

“When the Blind lead the Blind, both fall into a ditch.”

“In the land of the Blind, the one-eyed man is king”.

Likely that exercise wasn’t too difficult, if you’re anything like me, you’ve heard these phrases an innumerbale number of times in your life. And because you’ve heard them so many times, you’ve come to accept them as fact, likely without ever really considering the situations they describe.

Think for a moment about “the blind leading the blind.” The chance of two blind people actually falling into a ditch while walking together is very slim. The sight of the ditch is not the only cue of its location, and if these individuals have grown up blind, they likely have a variety of other compensatory mechanisms which would allow them to locate the ditch and not fall into it.

Now imagine a sighted person leading a blind indivdual around a ditch. Now the chance of the blind person falling in is actually significantly raised. While the two blind individuals were able to offer meaningful cues to each other to avoid the ditch, the sighted person is less aware of the exact needs of the blind individual, and would not be as effectively capable at guiding them away from the ditch.

Think now about “The Land of the Blind”. Would a one-eyed man really be king there? Almost definitely not, and for several reasons. For one, the “Land of the Blind” is likely suited to be used by blind individuals. It is not as if there are signs that only the one-eyed man will be able to read, because if everyone in this land was always blind, no one would have created the sign. Additionally, if this was the first sighted person born in a land of blind people, the sight would likely offer no assistance, because he would not be taught to make use of the skill. If no one else could ever see before, how could he naturally be able to use his sight to his advantage? He’ll also be far easier to distract; while his classmates can focus on their lessons, his eyes will be darting around watching birds fly by the window and the sun play tricks on the ground, all distractions his classmates are not privy to. He’ll likely be an underperformer, rather than a powerful king.

The explanation is that both are metaphors, and can’t be examined literally. But what is the metaphor suggesting? It is putting forth the notion that in all situations, it is better to have someone who is non-disabled or less-disabled in charge, as they will naturally be more capable of handling the situation than those with the disability. It refutes the notion that there are times when a disability could ever be an advantage, and teaches us, from a young age, to reject the disabled and find attempts to make them more like the non-disabled, which will in-turn empower and strengthen them. And that is a dangerous road to travel down, particularly when the evidence points away from it.

Rough Week comes to Promising Conclusion

This week with the boys started out very rough. It was a full moon, the weather was changing, and day lights savings was coming into play. To add onto this both boys are having their medication dosages changed. I was crushed by last Sunday’s experience, when Lawrence recoiled from my touch and hid from my presence, not producing a word the entire six hours I was there.

      But I went back this weekend and things had significantly changed. Lawrence managed a “Hi, Cale” when prompted, and used his new words throughout the afternoon to express wants. He smiled and offered kisses and hugs, collapsing in delight when I followed him around the house or mirrored him in a dance. I said to his mother at one point, “It is as if he remembered that he and I were friends”. It was so nice to have the old Lawrence back, one who hadn’t been fully there since his hospital stay in August.

But that wasn’t the high point of the afternoon. That came when Aaron’s friends, the family’s neighbors, were jumping on the trampoline, all six playing a complicated game with a dance. And Josh and Lawrence, of their own accord, climbed into the trampoline to join. The kids in the trampoline switched away from their complicated sequence to make a game everyone could enjoy like jump in a circle or see who can jump highest. Sometimes the insight/understanding held by the neighbor kids who have grown up with these guys is astounding. I hope there comes to be a point when all kids act that way towards others with disabilities.