Bet you didn’t know this either.

Posted on Mar 27, 2012 | 4 comments

Something slipped my mind this week. Or, maybe I should say it never registered at all.

Sunday was National Cerebral Palsy Awareness Day. Yeah, I didn’t know either. I only mention it because it coincided with a couple of pretty horrific news stories. Not exactly cause for celebration.

In the first, LaKay Roberts’ mother is told by her elementary school that LaKay is forbidden to use her walker any more. You read that right. Forbidden. The mother videotaped the conversation – and it is edited, and there is definitely some animosity there between her and Special Education Director – but watch it yourself below and see what you think. I have always maintained – and said on occasion to people working with May -  that it doesn’t matter what they think of me, their job is to take care of May.

In the second, Carolyn Jones discovers the beloved second child she is carrying may not live to term and, if it does, will suffer for as long as it does live. Terrible terrible news. She is already traumatized, but the State of Texas goes one further. After already enduring her sonograms, she has to have yet another – during which the fetus is described to her in-depth – and wait an agonizing 24 hours after it before she is allowed an abortion. (Read my BabyCenter post on her story.)

What is the point of a day of celebration, when people affected continue to be treated so barbarically? There has to be an entire shift in public attitude to stop these kind of things happening.

Having said that – and even though I have fought my fair share of battles – I am often surprised by the generosity of spirit that happens all the time, every day. Rather than focus on all this GRRRRRR, if a celebration is due, let it be about the every day people who help in simple ways. Here are some people we know who treat May – and everyone else they meet – with the greatest respect they can – normality:

  1. My nephew Connor’s school, Child’s Elementary in Ypsilanti, Michigan, where children with severe disabilities are integrated right alongside the others in the class. Or, Palmerston Primary School, in South Wales, that does the same thing. Both prove it can happen – and does - all over the world.
  2. Before I found our local, independently owned pharmacy, Sefgrove Chemists, I spent hours each week traveling to different pharmacies. One would stock a certain medication – and be the only one to do so – then we’d get back in the car to travel to another that stocked the other one we needed – only to arrive and find they had ordered the wrong thing. That NEVER happens now. Sefgrove even find mistakes the doctors make. Today, I happened upon a parent from May’s school there. She is not a local, but it didn’t surprise me in the least that she would travel there.
  3. The cafe near my house, O’Girasol, is always packed. It is the kind of place everyone goes to: elderly, babies, disabled – and those of us whose only disability is an inability to stop stuffing our faces with food. At O’Girasol no one cares when the disabled kid in the back screams with delight when his food arrives. No surprise the locals voted it their favorite business this year.

 

Want to become your local hero? Read my post: 5 very simple ways you can help the disabled

4 Comments

  1. That video makes me so angry… I know a lot of advocates and lawyers in Georgia and I’ll be sure to forward to them to help get the word out. That is an outrage that they would refuse to let the little girl walk because she fell once. Everyone who works with CP kids know that they will have their share of falls… even kids with severe CP are taught HOW to fall so that when they do fall, they don’t harm themselves physically… falls happen with CP kids and with neurotypical kids, but they should never be forced to stay in a wheelchair if they are capable of or learning how to walk.

  2. I spread this video on FB. It is so disgusting. My grand kids public school incorporates as well loud and clear- respect for everyone.

  3. Sometimes it is something not very complicated that makes a big difference. Our school district mainstreams special needs kids to the best of its abilities in classroom settings. But especially in middle school, the social aspect of things for those kids is a lot less inclusive. Our school has a club called Best Buddies for typically abled kids to pair up with special needs kids to include them in their social activities. It warms my heart to see the kids sitting together at the school play or picnic or whatever. The kids don’t think anything of it, just go with the flow if one of their group brings their best buddy. And I have seen parents of the special needs kids so happy to see their kids just having fun, not being treated differently. I only just found out that this club was started by the mother of one of the girls in my daughter’s group of friends. Ten years ago, when her mentally disabled older daughter was a sixth grader at this same school. This woman is a very quiet, timid, almost anxious woman much of the time. But she stepped up and advocated for her kid and others too.

    • I never cease to be amazed by people who do small things to effect change. Absolutely amazing.

Leave a Reply

Your email address will not be published. Required fields are marked *

* Copy this password:

* Type or paste password here:

19,521 Spam Comments Blocked so far by Spam Free Wordpress

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>