Monday, July 19, 2010

A Letter

"I know you've been feeling down these last few days so I thought I'd send you a story about my son,' read the email. I was pleased that my inbox read re: Hey Dave, It's Not Spam. I often worry that I erase emails that are actually for me in my rush to avoid requests for help in distributing 50 million Pounds. The email was from a regular blog reader, a woman without a blog to post stories, and she wanted to cheer me with a story. I love stories and settled back to read. After finishing I asked her if we could talk on the phone. She said, 'Sure'. During our call I got all the details of the story and then asked her if I could write it here. I am writing in her voice, I don't often do that but that's how this came out. She's approved the story. Here's what she told me:

My son is now just 14 years old. He has cerebral palsy and we've been sure from a very young age that he understands that he has a disability and we've answered every question he's ever asked. We've never said, 'You are just like everyone else'. We've never lied to him about his difference. At the same time we've let him know that his disability is just one part of him. That we still expected him to be our son and that there were expectations that came with that role. His brothers still expected him to be their brother and that there were things that he had to do to keep up his end of the bargain. Sure he has a disability, let's not kid about that. Sure his world is different than our other kids, let's not kid about that either. But he's still him and he still has a unique role in our life and in the world.

Over the years there have been frustrations on his part, on our part on the part of our other children. We've never downplayed them or pretended they didn't matter. We've never said to our son, 'Don't feel that way.' We've never said to our other children, 'You shouldn't feel that way.' We figured that we'd all best be honest and real with each other and the situations we find ourselves in. We've been criticized for some of our parenting strategies but as we were, for the most part, a happy family we let the criticism slide.

Here's the point of the story. Our son went for an appointment to talk to someone about his future. Job interests, vocational planning, that kind of thing. One of the questions that he was asked, probably to get at his interests, was 'What do you think you would have done if you didn't have Cerebral Palsy?' My son, we were told, stared blankly at the woman doing the testing and then after a long pause said, 'Nothing?' She was surprised and said, 'Nothing?' He said, 'Yes, because then it wouldn't be me.'

She talked to me later with concern because she thought he had begun to limit himself in some way. I, however, was thrilled. I asked her if she would ask a black kid what he would be if he were white and she was horrified. I told her that the question she had asked my son was equally horrible. She was asking himself to see his disability as a burden, something that he should shuck off if he could. It would be a way of thinking that would have him perpetually, in his mind, as a victim.

Later I asked my son about the interview. Deep in my heart I really wanted to know if he ever wondered, ever asked himself 'that question'. As I spoke to him I think I saw him for the first time. A young man who knows who he is. A young man who wishes to be no one else. A young man that I love with every bit of my heart.

When I told my husband about what happened he wanted to walk straight over to that woman's office and give her a piece of his mind. His son, the one with cerebral palsy, should never be put in the position of apologizing for who he is and wishing he was someone else, he said. "Don't you ever ..." I began asking my husband, and he said, 'When he was little yes, sometimes, but once I really met him, never again.'


The email and call did cheer me. In fact, writing the story brightened my whole day. There is much here. Much to think about. Instead listening to me ... I'd like to listen to you. What say you to the mom who told me this story.


Anonymous said...

Thanks Dave, and Mum, as someone who has been there done that this brought tears to my eyes, bloody stupid emotional old fool that I be nowadays we is who we is and that is all there is to it why should we be any different?

Kristin said...

That reader has an incredible son and is an incredible parent. Wow, what a story.

miss kitten said...

i have a son, too. and i am honored to say that at age 17, he is honest with me and tells me things he doesnt tell his dad.

last year, he shared that he had had a relationship with a guy. i looked him in the eye and said "ok, and?" and got to see that mix of fear (of telling me) and wild joy (that it was a non-issue).

he began his thinking years going to work with me, when he was 4. i worked on the special needs school bus, and he learned that it was ok to be different, and that his mama loves pretty much everyone the same. and that some people use wheelchairs and some dont, and some are really good with book learning and some are not, and we are all perfect in our imperfections.

i say hip hip hooray for you, mama and daddy, for showing your son that he, too, is perfect in his imperfections. that CP is just a facet of your son, and not *all* of him by a long shot.

very cool. and very cool to you, too, dave, for sharing their story with us. *looks both ways then sneaks dave a hug around the neck* oh and here's one for joe, too *hugs* because he loves you and you love him. :)

Blog editor said...

I'd say thanks for putting your wisdom into such clear, unequivocal words, and keep talking - many of us have much to learn from you. And from your son.

When I asked my son (24) a couple of years ago if he had Down syndrome (just checking what he knew)he said "it's just me". I wasn't sure if that was a profound or quite unthinking response. The longer I think about it, the deeper I think it is.


Belinda said...

I think that young man and his mom have probably changed a lot of minds for the better. Thank you Dave for posting this wonderful account.

Glee said...

When someone hurt me in relation to my disability when I was a kid my Mum would say "never Mind" and also "they didn't mean it". I hated it because I did mind and I was there and I saw that they did mean it. I felt the injustice of it but I was told time after time and one is supposed to believe your parents.

So for all of my life til I was about 45 I "knew" that they were good and it must just be me. I also knew that I must be wrong cos the doctors, physios, OTs, specialists etc all said how wrong I was while they made me parade up and down in my undies.

Underneath somewhere inside I was outraged cos the true self still lived but outside I lived to fit in and not "put anyone out" with my faults. The rage surfaced occasionally but it left me wrecked and scared.

So eventually I started physcotherapy (which I still can't spell lol) and for 5 days a week for 50 minutes a day for 6 years I did my thing on the Couch. We Australians scoff at the Americans seemingly obsession with therapy. But I knew I had to get into the core so I did it anyway.

It was the hardest process of my life. (that is such a small sentence for such pain and anguish and joy and fear and and). But I came out the other side with my whole self found - what a difference.

You son will not have to go thru that and I congratulate you for that. I held my breath before I got to your son's answer and then smiled and smiled aaaahhhh.

Limiting himself NO NO NO. I was the one who did that. I am so proud for your son a fellow crip and proud for you. Stories like yours lift me up cos I am a getting old crip rights activist and get very discouraged sometimes. To know that the young crips of today will have more chance of loving themselves gives me a boost. thank you and you too Dave.

ivanova said...

What a terrific story. This boy is an awesome teenager and I don't need to be a vocational counselor to know he is already doing great things with his life. I'm sure the mum and dad are very proud.

Anonymous said...

You rock!
Archie's NaNa

Anonymous said...

The wheeliecrone says -
Well done, Mum. Well done, family. Well done, Son.
You are all very lucky to know and love each other.
You have a wonderful story.

FridaWrites said...

What a great mom! I wish everyone were so accepting--disability is very much part of the whole person, but not something that makes us lesser. I think a lot of ABs think we spend time wishing things were different.

Georzetta said...

You have no idea how much I would wish these parents for every child. I've taught at the middle school level close to 20 years. I do see this as a story about good parenting for a child with disability but it's also about how sad a state some parenting is for a huge group of children, disabled or no.

Make no mistake, the disabilities we acquire from neglect, disrespect, cruelty, and all the abuses that are out there are devastating.

There is no measure of one disability being worse than another. We talk about severity of disability for practical purposes but the emotional toll of living with any disability is unique to the individual.

How I wish all the parents of all the children could be this clearheaded, compassionate, and kind.

theknapper said...

I hope the vocational person got that her question wouldn't help this or any kid and that she was given a profound lesson.
Thanks to this mom who shared her story......this and other stories needs to go into a parenting support parents to see the world and their child(ren) no maybe it could just be a book for everyone....disability isn't the's ableism.

Jan said...

Thanks to the mom, dad and 14 year old and you too Dave for continuing to educate us all. What a lucky young man to have parents that raised him to see himself as much more than the disability. All children need parents to teach them to see themselves as the sum of the parts. Great story and great family. Thanks

Clay said...

The "Vocational Counselor" wanted for him to think about what he'd be interested in doing, so that's exactly the question she should have asked him. Instead, she tried to play a psychological mindgame with him. Those games usually don't work on those of us who are just constitutionally "different".

The analogy of "What if she had asked a black kid that?" is exactly right. Equally insulting.

Anonymous said...

I guess I would just like to say thank you. My son was born with some minor birth defects but since he started nursery they have referred him to one professional after another in an attempt to find out what was "wrong" with him. Not surprisingly after professional number 5 or 6 they found something. It has got a bit hard after each diagnosis to look at my darling wee boy as the normal child he is and not hold my head and cry (I have done.) He is however himself and I am glad to be reminded of that today.

Hope you don't mind Dave but I'll remain anonymous today.

Rachel Cohen-Rottenberg said...

Would that everyone in the world had a mother and father like the ones you've posted about today! The world would be a much more expansive and respectful place.

And as a getting-up-there-in-years person, I'm very comforted to know that the generations to come are moving the process along. What a great teenager! Kudos to everyone.

Lori said...

Awesome! Love the analogy! This young man has parents that understand and have raised him very well. Kudos to both of them and kudos to you Dave for sharing. I agree with "theknapper", a book should be made with these stories for all parents, teachers, caregivers, etc.

Thank you!

Anonymous said...

Hi Dave and the MOM of the CF son and of course the son. Thanks for posting the conversation on the WEB for others. Sometimes that is what each and every one of us needs. We need to see life through someone else's eyes. Yes, sometimes we complain about this ire that but really, in the scheme of things is it really that big an issue? Before any one of us wants to complain, let's take a time out and reflect upon others and consciously think about the issue at hand.

Take the CF son, he obviously has been loved, encouraged, and has been a source of inspiration to his family, friends and others who come in contact with him, even if it is through the WEB. We all, including you, me and the CF son leave our mark in society. This son knows nothing more than he is loved, respected and a credit to our society. We all have struggles, some more visible than others and some that are not apparent. Does it really matter if it is apparent or not? I say not. What really resonates with people is how each of us in society function with OUR struggles, be they mental, physical, mobility, financial or anything else.

I really appreciate the discussion and strongly urge readers to think before they act or respond. Does it really matter? Is the world really going to change because someone missed the green light, because someone has moved to the front of the line to be served because I turned my back and the opening was there? I say no, what I say is that the behaviour I saw represents that individual, not that of society. My hope is that the individual will sometime take a time out and consider if what they did was appropriate. Hopefully the green light will come on and their behaviour will change. A touching story as "A Letter", maybe we should all be happy because we all experience love, affection, respect and the "time out" to reflect on what we see or perceive prior to becoming vocal. Thanks Again to the three of you.

Andrea S. said...

I'm responding to this late -- but I just wanted to say THANK YOU to the Mom who wrote this letter for "getting" what so many non-disabled people don't: That it is possible to acknowledge that a disability is an important part of who a person is, that it does shape your experiences in a powerful way, but that it's still not the most important thing.

Many people I've met seem to think that it is all or nothing. Some people think that the minute you mention disability that you are making it the center of things. Not so. You can mention it, you can even acknowledge it as important, without overshadowing everything else.

A few weeks ago, I saw an announcement for some writing competition for fiction stories in which disability was supposed to be present but not the primary focus of the character -- i.e., the story was not supposed to be just about the disability, the character was not supposed to be JUST a character with a disability. I don't know what's happening with that competition now, but some of the people reacting to the proposed competition in the comments thread seemed to completely miss the point of it. They could not understand how you could possibly have a character with a disability without that disability automatically taking over the story. They seemed to think that the only way you could have a disabled character without that happening was to never mention the disability at all in the story, which would mean readers wouldn't even realize the character was supposed to be a person with a disability! Talk about black and white, binary, either/or thinking! They could not seem to grasp the simple concept of striking a healthy balance: a person can have a disability and also simultaneously have 100 other characteristics and personality quirks, and ALL of them matter, ALL of them are critical to understanding who the person is, but NONE of them by themselves define the whole picture.

I just wish there were more people who "get" it!

I was lucky to have parents who "got" that my being Deaf IS an important part of who I am but still not the single most important part. Your son is also lucky to have you!

Anonymous said...

This wonderful tale reminded me of a story that I adore. I have a sister with intellectual disabilities, Claudia. When my daugher Stacie was 8, my mom & sis went to pick her up from the babysitter. Later that night Stacie said "Timmy (neighbor boy @ sitters) called Claudia a cripple. Why did he do that?"

I replied "Well, cripple is a not very nice name for someone with a disability. And Claudia does have a disability but she has more abilities."

My Stacie said "well, that's sad, isn't it?"

I said "well I know what you're saying but we love Claudia just the way she is....that's WHO she is"

Stacie was quiet for a few moments. Then she looked at me and said "Yeah, well, I told Timmy he was scum anyway".