Saturday, April 30, 2011

Being Youer than You : BADD 2011

“Today you are You, that is truer than true. There is no one alive who is Youer than You.”
Dr. Seuss

My nephew and I, who both live with disabilities, have had a year of changes.

Many of the changes were external. I've watched my nephew grow in leaps and bounds as he started high school. I've also seen resources stretched, learned about IEP ins and outs, and realized myself how little I knew last year about what was about to happen this year on his educational journey.

Our educational system makes it inordinately difficult for children with disabilities to get an education. There are information gaps, snafus with communications, and time consuming, unnecessary oversights that sap the energy of the most devoted parent. How sad that many educators still don't get that every child is precious, no matter that he or she doesn't fit a preconceived mold. So much effort, it seems, is put into forcing children to fit that who they are can get lost and, even worse, the gifts a child does bring to the table are ignored.

Dr. Seuss would be appalled.

Don't get me wrong. I was never naive enough to assume the changes this year that both of us encountered would be easy. Nor would I ever teach my nephew not to expect some frustrations and difficulties when facing change. That's part of life. It is the ignorance toward disabilities, the accommodations required and the disrespect toward children with disabilities inherent in the ableist attitudes of some educators that I can never condone.

As an adult living with quadriplegia, I've long ago made peace with the fact that I'll encounter ableism from time to time. It's out there and a fact of life. Whether I'm doing things differently or depending on physical help, some see that as "less than" . Never mind that some accommodations make me more productive and that living with a disability has been an invaluable asset in many ways - there are those who judge so quickly that they lose out on learning about the rich diversity of other humans and assume negative things. This is part of why so many people with disabilities who want to work can not.

But I am much more concerned about our children with disabilities, because keeping them from accessing an education suited to their abilities makes it so difficult for them to be who they are. College prep isn't useful for everyone. Having a job isn't for everyone, but realistically preparing for a child's future should never be seen as a waste of resources or completely overlooked.

Until we value everyone's humanity, our social systems, including our educational system, will fall short of providing our kids with what they need. I know advocates and parents continue to work to improve the educational system's failure to respond to the needs of our children.

In the meantime, we can teach them to Be the Youest of You as we love them through their journey in an ableist world.

[This post was submitted to Blogging Against Disablism Day. You can read more posts here. ]

Tuesday, April 26, 2011

Have you signed up for Blogging Against Disablism Day 2011 yet?

If not, click below

Blogging Against Disablism Day, May 1st 2011

This annual blogging event over at Diary of a Goldfish is open to all and welcomes bloggers who cover a myriad of topics about disablism (or ableism) . Click the image above and check it out!

Monday, April 25, 2011

The Church at Tree Lake deaf ministry

Profiles in Childcare: The Church at Tree Lake deaf ministry - Examiner

Sunday, April 24, 2011

Swissair bars UN Rapporteur on Disability from flight in Europe

Yet another airline bars a passenger with a disability

Saturday, April 23, 2011

See Hanna run!

This is the most profound spiritual truth I know: that even when
we’re most sure that love can’t conquer all, it seems to anyway.
~ Annie Lamott

My sister, nephew and I went to the movies yesterday to see Hanna, a teen who was raised by a guy who acted like a combination of James Bond and what others have deemed a home schooler gone bad. it isn't until the end of the movie that I found out who Hanna was or why she had to keep running. But that didn't make it any less enjoyable.

What stood out to me was that in the midst of a scifi action flick, there were tender moments Hanna experienced with people she ran into on the road. I'm not talking about her attempt to date. Yikes. But friendship was explored and loyalties and , yes, love.

In the midst of what goes on in life, even when things get tough, the adage the tough keep going is tossed about. That's true enough but sometimes we forget how acts of love carry us, from unlikely places.

We're thinking a sequel will be happening or maybe a TV series.

Thursday, April 21, 2011

The sounds of spring.

Its nice to be outside in the spring

I spent so many years watching for sharp objects on the ground with air filled wheelchair tires that even when I got flat free tires on my power chair I winced when I run over branches, bottle caps or a bit of glass.

But i got over it, realizing ...There won't be any pfft sound No my tires will not be flat later. There won't be a mad rush to see if I have a spare tube or tire. In fact I could back up and go over that sharp object again. Take that and that and that.

Crunch! Squeak! Crackle!

The trick is to do it quickly. Forward. Crunch. Backward. Crunch.

Do it while saying hi to the neighbors. No way they'll catch on.

Hi. Crunch. How are you? Crunch.

Pass a bicyclist at a curbcut and do it on leaves Forward. Crackle. Back. Crackle.

Squeaks are harder to get away with. Folks start looking around and even underneath themselves. You can a,ways divert their attention by saying wow. Lots of squirrels this year. Makes them look under your tires as you pull away.

A typical day in the neighborhood.

Tuesday, April 19, 2011

Blogging Against Disablism Day is May 1, 2011

Everyone invited!

You can read about it and register here. Will add more to this post when I can

Disability stereotypes

Hero or victim?

This post talks about how people with disabilities sometimes are perceived as one or the other

Worth a read.

Sunday, April 17, 2011

The Day - New London High School a mobility challenge to students in a wheelchair | News from southeastern Connecticut

The Day - New London High School a mobility challenge to students in a wheelchair | News from southeastern Connecticut

Maybe I should call it a bucket list...

I use lists to be clear about the tasks i need help woth from aides Every time an aide forgets to do something on the list, I wind up having to do either a workaround , call someone in or struggle to do it myself. it's time consuming, frustrating and unnecessary.

I'm wondering if I should just call the task list my bucket list. Maybe that would have a sentimental feel to it.

E.g. I really want the wet towels up off the bathroom floor, want the toilet paper replaced.....

I really don't want to have to stop work and roll around and check to see if things are done

Yes, these are my long held dreams. My bucket list.

Friday, April 15, 2011

Congratulations Ms Wheelchair Minnesota

Exciting news! Our fellow blogger Jenni has been crowned Ms Wheelchair Minnesota. She writes over at The Site That Breathes. Jenni is a college student, a wonderful writer and will make a great role model.

If you would like to congratulate her, you can visit her blog here

Thursday, April 14, 2011

All you kids out there...

When I spoke to my nephew about peoples reactions to his scooter, I told him what I've learned.

Some folks will be considerate and reasonable. Some will not. I advised him to live his life to the fullest anyway.

I write this blog for him and other kids living with disabilities. My nephew asked me to.

There should be a place, he said, where people can go and see what it's like to live with a disability. I told him I would try to do that here in this space.

Sometimes it's a challenge. Should I write about asking for accommodations and being met with sarcasm or downright hostility? If so how do I balance those experiences with all the positive parts of my life? How do I express the joys and the love I've witnessed as well?

I can only speak for myself..... but I think of him as I write too. Hanging onto the wheels of my chair as he tried to stand up, sitting in my lap, singing Weezer on the car with me on the way to church. And now, becoming a young man.

He lives with disabilities too, boldly and without compromise. He never needed my permission or even advice to do that. He had it in him all along.

And he would want me to say to all of you that you kids, no matter your age, out there do too.

Tuesday, April 12, 2011

Jetstar stops two disabled TV presenters from boarding plane

Story at link below

Sunday, April 10, 2011

When there are no caregivers...

...these things happen.

An elderly woman who ordered a pizza every day had her life saved by a pizza deliveryman when she failed to order.

Saturday, April 9, 2011

Music by Prudence available for screening

Via it's site
Music by Prudence traces the path of a girl with a disability called arthrogryposis, and her remarkable transcendence from a world of hatred and superstition into one of music, love, and possibilities.

The DVD for Music by Prudence can be screened by libraries, schools , faith groups and community centers. For information go to

Friday, April 8, 2011

Unfinished (Sandwich ) Symphony

An unfinished sandwich left on my manual wheelchair.

The kitten places his front paws on the chair, back paws on the recliner As the wheelchair rolls, his body stretches and he jumps back .

Then he tries again , his body stretching further, his nose sniffing at the sandwich. Further, further...he pulls back to the safety of the recliner.

In typical cat fashion, he nonchalantly begins to take a bath, convincing himself he really didn't want that sandwich in the first place.

Thursday, April 7, 2011

Sometimes you don't have to say a word...

Two accessible parking spaces.

A woman without a handicap placard or plates is in one, sitting in her car

She stares as I pull in, open my van doors and lower my ramp, then roll out in my power chair.

As I close the van , she says to me " i shouldn't be taking up this spot", pulls out and drives to a regular parking spot.

Tuesday, April 5, 2011

Riding a cow

A German teen who wasn't able to get a horse trained a cow to ride.

You can find the story here

I admire resourceful people. Seems that people used to ride young cows around farms in the past, according to the article. The teen says it took lots of training and the other cows are jealous of the treats given to her cow-pony, but horses join in when they ride.

Ahh jealousy.

Neighbors sometimes laugh. Skeptical at first they said. But yeah they ride together. That teen and the cow.

Ever feel as if you're breaking new ground using a resourceful approach? I see it all the time in the disability community. Funny the reactions it can get. But when it works that's what matters.

Sunday, April 3, 2011

The last taboo

Assisted suicide, a teen who becomes a quadriplegic after an accident dealt with in a British TV show. This article says in American TV this topic is the last taboo and the plot would have been written differently. Interesting read.

The last taboo

Saturday, April 2, 2011

World Autism Day 2011

As we mark this day, I'm running across many posts about it, but I wanted to share the one below .

Feel free to leave links to other posts you find in the comments.

Autism Truths I Keep Close