This month’s contribution to our Widening the Disability Perspective series come from Melanie, who blogs about dreams, family life, and ice skating at I Will Skate. I’m so glad that she has decided to share her story with us.
Changing Perspectives by Melanie
Thank you, Rachel, for the honour of guest posting on your blog. I am originally from England; I thought I’d clarify that to explain my quirky spellings and phrases!
My post is a meditation on the theme of widening the disability perspective.
What is perspective? It’s something that we use every single day. Anyone who can reason uses perspective, and the fascinating thing about it, to me, is that everyone’s perspective is unique, even that of identical twins. What makes it even more intriguing is that most humans are stubborn about change, but anyone’s perspective can change just like that. I know that mine did.
This post is about my youngest child, my son, who will be four years old in July. His pregnancy name was Oat, so on my blog, he is referred to as Oatie. Oatie has di-plegic cerebral palsy, which is CP mainly in his legs.
Oatie and I often feel like we’re “frauds” in the world of disability. Why? Can he walk the same distance unaided as another non-CP child of his age? No. Could he walk last year? No. So, why?
Well, if someone were to look at Oatie, no one would think, at first glance, that he’s disabled. I describe CP as akin to a condition resulting from a stroke, but in the womb or shortly after birth. Most of the time CP “happens” while in the womb.
You see, the funny thing was that I naively thought that, because I would have children while I was young, I would have less chance of having a child with a “birth defect.” I was super healthy and fit. I was triathlete fit, but not extreme. I ate what I liked, had never been on a diet, had never smoked, and only drank in moderation at special occasions.
After an uneventful fourth pregnancy, I had Oatie. He came out suddenly at 37 weeks and, aside from his placenta being diseased, he looked “normal” and was my best feeder. There seemed no cause for concern at all. My eldest, who had been born eight weeks premature, walked independently just one year after his due date. My daughter, with whom I’d had a textbook normal pregnancy, didn’t walk until she was almost two and is now the youngest junior figure skater our club has ever had. So when Oatie was cruising furniture at two but not letting go, I was concerned, but two doctors said that I was worrying about nothing. My husband and I decided that as soon as it got near to Oatie being two and a half, we weren’t taking no for an answer. We were getting a referral. The pediatrician we ultimately saw diagnosed Oatie with CP on a foot reflex test when he was two and a half.
Wham! That was when my perspective changed. I suddenly went from a relatively carefree mum of three, to a mum of a child whose path wouldn’t follow the “norm.” One minute, my main concern was what to cook for dinner, and the next minute, I was wondering whether Oatie ever had a chance of leading an independent life.
You might be throwing things at your screen, right now. OMG! How could she be so ignorant of the possibilities? But it’s not until you’ve experienced things in life that you move into that inner circle.
I wasn’t ignorant or narrow minded. In England, I had been an ethnic minority. I was a Girl Guide, and I’m still involved in the Scouting movement today. I had raised money for all sorts of charities and traveled around many parts of the world. I believe that, in our junior school class, we had a child with CP, but being as accepting as we were, we never asked him what was “wrong” with him. He was a kid, we were kids, and no one cared if he dragged one of his legs. He was just part of the class like the rest of us.
But my perspective then was so different from what it is now. I didn’t realise then that people with CP or any other types of disability could be highly intelligent. I thought that a lot of “birth defects” were from poor diet and substance abuse. I thought only of the extreme cases of CP. Before I had kids, I thought that if I found out during a routine pregnancy scan that my child were disabled, I would have an abortion.
Well, after knowing Oatie, I SO wouldn’t.
I’m not saying that raising a child who is mentally super bright but has difficulties verbally and physically expressing himself isn’t hard or heart-breaking at times. It is. But Oatie has the purest soul and is the most determined person I’ve met in a long while. He is someone who will fall down and not even wonder, “Should I carry on?” Giving up is not an option and, in the blink of an eye, he’s trying all over again. He is so loving, so intelligent, and so funny. I feel privileged that I get to witness his journey in life.
Why am I telling you all this? Well, I’m an opened-minded type of person, really, and I know that if you’re reading this, you’re probably open-minded, too. But be honest with yourself. What was your perspective before you experienced your own disability, or before you became a caregiver, a parent, a sibling, or a friend of someone in the world of disability? How has your perspective changed?
My perspective is so different now.
Oatie is three years old, and he has already been subjected to some horrible social encounters. We’ve encountered the disdain of people frowning on me parking in the disabled bay, even with a blue badge. Some days, Oatie just wants to walk, and his therapy doesn’t recommend an actual walker, so he has my hands to hold as his walker. What’s wrong with that? Why do people think you have to be old to be disabled?
Stroller skating — what Oatie refers to as “buggy skating” – means sitting in his pushchair while one of us pushes him around on the ice. When Oatie was only two, he was shouted at by two rink employees and asked to leave the ice. Yes, I stood our ground and showed them the rules, but they apologised only after I phoned the duty manager. Oatie, who was not able to construct full sentences at that stage, understood their meaning fully, burst into tears, and said “Oatie no skate.” And even though we said that they were wrong and that he could, he pointed at the men and said “No! No!”
He has been bullied at preschool. He’s in a French preschool that serves a minority community in Alberta and, what got me was — a minority, picking on another minority! Oatie was deemed dangerous to others because, after 15 minutes of repeated bullying and derogatory behavior, he reacted. He had kids saying, “Hello? Are you in there?” He had kids snatching and throwing the toys he was playing with. He had kids saying he was a baby because he couldn’t walk. And before you say that they’re just kids, please know that the parents weren’t much better.
Well, only after many hours of argument and discussion did the other parents back down in a public display of shame. Oatie had five families who took a stand with him, and stood shoulder to shoulder with us and defended him. We managed to resolve all of it, and he’s now thriving at preschool. He is as fluent in French as he is in English, though he finds French easier to pronounce!
Even air travel has been a struggle. Oatie’s therapy is ABR (Advanced Bio-mechanical Rehabilitation), and the headquarters is in Montreal. Last March, before we started ABR, Oatie couldn’t walk or stand in open space. He could hardly stand even holding my hands, and he didn’t hold on, so imagine holding a floppy sack of sand, and not being able to put it down, while you need to get your wallet out, put your coat on, and open a stroller. I worked for a major worldwide airline, so air travel is like hopping on a bus to me, but even then, oh my, what a “physically impaired” person experiences traveling is something that an able-bodied person just doesn’t understand. Next time you go on a plane, have a look at the toilet, and think “If I were disabled…?” Exactly!
I took Oatie, by myself, to Montreal. I worked at check-in ground staff, so the whole airport scene was “my thing,” but going through security with a child who couldn’t walk was needlessly difficult. They removed his shoes — which, to Oatie, means that you have given up on him walking, so you’ve taken his shoes away. Once I managed to get him on the plane, I saw the seat and thought, “Is that comfy for someone with CP? No, it isn’t.” I had to wedge my coat behind him so he didn’t scream in pain.
And what about when they don’t bring your stroller or wheels to the aircraft side? I requested a wheelchair when we landed, and nope. There was no one to greet us. People look to see what’s “wrong” with Oatie, treat him like you could “catch” something, and WALK ON! There was one person on the whole aircraft who helped me. He was an off-duty soldier. This guy on leave to visit his mum was the only person who helped me out of over 100 people. He was so nice that he helped us off the plane. As soon as he saw that Oatie’s wheels weren’t there, he helped me right from the aircraft side, pulling our bags off the belt and taking us to the taxi rank. He even gave me his local barracks number to say that if we were stuck, in trouble, or needed anything, he’d send a tank over, as he knew that Oatie loved cars!
I think the biggest thing I have done, apart from Oatie’s ABR therapy, is not to pity him. Would you want pity? I challenge him, as I know that’s what he wants. Like his coat, he couldn’t take it off. It was almost unrealistic for him to take it off. He cried for a few minutes, saying, “You do it,” but then, he had a go and almost got it off. Now, he can take it off in a minute and is so proud of himself. Time for the next challenge, please.
Oatie can now walk 20 feet unaided, even carrying an object or a lunch bag. He can stand in open space, turn in open space, and sit on an airline seat without support. He can climb in and out of his car seat, take off his shoes and coat, feed himself, and mix a scratch cake. And he has started to read.
I see so many other mums who all look over at Oatie, and it’s written all over their faces: They’re SO glad it’s not them. I’ve heard people say, “How on earth can you DO IT?” and “Could you imagine having a disabled child? It would be awful.” I’ve even had people say to me, “They would be better dead.”
Yes, my perspective has changed. Meeting and knowing Oatie has changed me. In my mind, he isn’t disabled. It’s his dream to ice skate — and he will, whether it will be from the comfort of his stroller, or standing on the ice, who knows? But if anyone has the determination to do it, it will be him for sure. Just because he’s physically restricted, he’s not the disabled one. His mind is open, and pure, and wanting to engage life to its fullest. He’s not thinking typically three-year-old stuff about painting a cat. He wants to take on the world. He’s determined to walk independently. And, in all the months of bullying, not once did he NOT want to go to school. He knew that if he wanted to go to school, he’d have to endure the bullying until we managed to stop it.
It’s us, the so-called able-bodied –– we’re the disabled ones for not seeing clearly. We’re the ones whose perspective on physically or mentally “impaired” people needs to change. We have blinkers on, and it’s time that, one by one, we take the blinkers off and review our perspectives.
“we’re the disabled ones for not seeing clearly. We’re the ones whose perspective on physically or mentally “impaired” people needs to change. We have blinkers on, and it’s time that, one by one, we take the blinkers off and review our perspectives.”
YES WE ARE AND YES WE DO NEED to change our perspectives
I used to think My perspective was right and I was open minded. Now I know I was so wrong and lost. I used to help and organize a sumer camp for kids with disabilities And Now that I look back I know I was so ignorant. I deal with most of the kids as if the where impaired or years back of their real ages so I spoke to the 10 yo as they were 5, or 6.. I was so wrong.
Now I’m, like you said, more near the inner circle. “But it’s not until you’ve experienced things in life that you move into that inner circle” Because There was not another way for me to see my own perspective was wrong.
And now I’m the one that hates when people refers to my kid as “sick” “impaired” ” dumb” He is AMAZING,
Hugs for Oatie
Dear Sabrina,
Thank you for your comments and your honesty. It’s true though, but it took guts for me to say what I said, and I’ve never even said what I did on my own blog lol!
I agree with you, each time I go for a swim, there is special needs/handicapped swimming programme after our session and in the changing room the aids who are very, very nice people… But, the conversations that they have or the patronising things they say, they talk to these adults like they are pre-preschoolers and really talk down to them. I often feel like having a word with them…
Sending some huge hugs back to your son, and Oatie says thank you for his.
Love
Mel
xxx
Dearest Mel,
I found you! What an exquisitely written piece on what you have learned in a relatively short time about the world of disability. I have a short story to add. One time when I was still living in in our old community, about two years after Adam’s accident, I was out doing errands. It was always difficult to run into people because they never knew what to say to me and, most often, felt guilty because they had stopped calling and visiting. This woman, mother to one of Adam’s best friends, said, “You know, Sharon, it would have been easier to know what to do if Adam had died.” There is no script for how to deal with long term disability – no rituals, ceremonies, closure. I was horrified. We know how to act when someone dies, we cannot figure out how to relate to someone who becomes disabled, who no longer walks and talks. So, what do we do as a culture? We stay away, we run away, we ignore. This has been our experience.
Hey Mel, maybe we should co-author a book – a handbook on how not to act, what not to say?
Love, Sharon
Dear Chavisory,
I’m sorry I didn’t catch that article.
You’ve clinched it… “I hadn’t fully realized just how many people apparently consider having a harder life than their own to be the worst possible fate imaginable,”
That’s is it, the perception or perspective is at your imaginations limits. Sometimes you have a choice in what you’re dealt with, i.e loss of a limb, and sometimes you don’t, the twins that you mentioned above.
I love your line: “since when do we let the judgement of sociopathic grade-schoolers determine whether a life is worth living?”
I am so proud of Oatie and his brother and sister…and just stunned and still shocked that I would ever think like that, I do think that some of the material that you read when you’re pregnant makes it seem like the “norm” to think like that….The pregnancy books all talk about the perfect pregnancy and the perfect birth… and the perfect baby…. (which isn’t right) maybe they should add a few chapters about coping with a child with disability or premature birth, that it isn’t the end of the world and that people can have a very full and enriched life with their “special uniqueness” and there is nothing wrong or ‘OH NO’! about it and that they are perfect just the way they are.
I think that Oatie, will be a perspective changer, he will push and challenge till someone sits up and takes note.
Love
Mel
xxx
I am very happy that you and Oatie are part of the “inner circle.” We share the same perspective and beliefs. It seems to us and to others that our kids have a very hard life, and perhaps they do. They have many physical and cognitive challenges; they may look and act different; they may be invisible to others. But you see what we also see with Adam, a very pure spirit and an inner determination which for many of us without these challenges is hard to maintain. Our kids teach us a lesson…Oatie always seems happy and working hard! It’s just to bad that so few people see such purity and determination and are blinded by what people cannot do right now! Our warmest wishes!
Melanie,
Thank you for sharing your story. Since my son was diagnosed with autism, I gained perception into disability and the human condition. The journeys you and I went through are similar. I rethought everything I knew about parenting. Truly understanding disability means looking beyond obvious differences and into the potential that each person has. I am glad to know you and Oatie.
Thanks Sharon, Phil and Lori,
Sorry, I wanted to reply earlier, but in my English “wisdom” early hours of Sunday I decided to run the Calgary Half Marathon (yesterday), which I hadn’t truly trained for…. I ran it for a multiple reasons, but mainly for Oatie. When I ran it last, I didn’t know he was “disabled” he was 11 months old. I ran it more for the point that he strives beyond the boundaries everyday, and every now and then I have a need to go beyond conventional boundaries of aspirations, like you see a goal and odds are stack against but you do it….. and succeed.
Lori: It’s so true, when you are in the “inner circle” which is a much warmer, more humane place for a start, anyway, with real people, not the people who crave the latest flashy car for example. I so agree, rather than blanketing and knowing your kids will do this at this age or that… you actually start to look at all of them as unique individuals and realising or getting them to realise their full potential. My Father-in-Law would have fallen into the bracket of Autism and my husband probably to a minor degree.
Phil & Sharon: that is just so shocking and awful, and why people need “closure” on Adam. Having had the privilege of meeting Adam, he is far from being closed, his spirit, soul and aura is just so pure, he is filled with love, not hatred and for me being in his company is actually refreshing and nice to actually be with someone who doesn’t have the typical human vices that we all have to some degree. People have “run” from Oatie too, some of our adult friends have ‘Fled’ as hanging around a kid with a handicap is so ‘restricting’ for them. (I’m like if that’s what you’re like, than do I really want your negativity in our life in the first place).
Sharon, it would be a honour to co-author a handbook, I’d never say never. (Guys If you haven’t checked out Sharon’s book it’s probably one of the most honest reads you will ever read. It’s an amazing book)
Thank you to everyone for your lovely comments.
Mel & Oatie
xxx xxx
Thank you for such a beautifully written post. It struck home as I do have an identical twin sister who has recently had a brain tumor removed. As a result of the tumor, we no longer look alike. She is easily 50 pounds heavier and is emotionally and physically exhausted. But yet, from the outside she looks perfectly normal, albeit at a bigger size than me. She gets hurtful and ignorant comments all the time as people just don’t know.
How I would love to change their perspectives. You just never know what a person’s situation is until you ask or find out. Thank you again.
Oatie seems like a great little guy–I’d be proud to be his mom if I were you.
Did anyone else happen to read the article in the Times magazine this week about the conjoined twin girls? A lot of Melanie’s experiences remind me in part of the responses to that article…the article itself is fascinating, but in the comments I was SHOCKED at how many people were apparently perfectly comfortable saying that it would have been better for them to be aborted, since their lives were going to be so hard, bleak, “stunted,” etc. etc. It’s stunning. Obviously those little girls are going to have it harder and will always be different and won’t be able to do lots of things that most people take for granted…but they’re also, all things considered, fairly healthy, breathtakingly adaptive and intelligent, and clearly enjoying themselves. Not to mention that they have an experience and relationship to each other possibly unique in the history of human neurology. I hadn’t fully realized just how many people apparently consider having a harder life than their own to be the worst possible fate imaginable, to the point that they’d decree that a pair of obviously loved and wanted little girls should’ve been spared their existence. One writer even suggested that they should’ve been aborted because while things are rosy now, it’ll be harder once they face the judgment of their peers when they start school. I thought, “since when do we let the judgment of sociopathic grade-schoolers determine whether a life is worth living?”
Very nice post. Ignorance is so hard to deal with, especially when you’re dealing with children. I suppose all we can do is continue to educate others, as much as possible.
Oatie looks like he’s come a long way, and still going strong. Good for him!!
Dear Lizbeth,
So sorry to hear about your sister’s condition, I know you just never know what that person is or has been through before ‘people’ cast judgement. I was always a US size 6, and no matter what I ate I remained that way, however each pregnancy I put on 70lbs (even with gentle exercise) 3-4stone one weight, not from indulging, but because my hormones are out of balance. So being that much heavier, and apart from being pregnant not from my own fault (indulging), I had a new appreciation for people who were overweight, that it’ isn’t always there fault and after Oatie it’s taken me 4 years to lose 55 pounds this time round as I would lose it before getting pregnant again…, and I still have 14lb’s to go and that’s after a 2km swim and a couple mile run, M-F. I get the scream…. “OMG what has HAPPENED to you!!!” when people see me who knew me before.
Funny enough I used to get nasty comments when I was a size 6-8 too, lol!
I don’t know about you, but would it be nice if people, you, Oatie, your sister were just accepted for you.
Just yesterday, I had a lady at the rink, asking why am I in the disabled bay with two figure skaters, and I retorted back, yes I have two figure skaters and one DISABLED…. another person said “he (Oatie’s) a good boy sitting in the stroller like that…” and I was like “he can’t walk so doesn’t have much choice” Sometimes I wonder if when I’m snappish, if they will actually remember and change their perspective… as the first lady offered to help and the second, bent down and apologised to Oatie. When I’m all smiles, they seem to ignore you and walk on….
I hope that your sister makes a full recovery and sending you both some of my special hugs….
Love
Mel
xxx
Dear Flannery,
Thank you for your comments too, I agree education is paramount, I really feel that even if people who are not on the normal distribution curve of being “able” either physically or mentally…. that there should be joint ventures between these communities, to broaden peoples “horizons”, to get these kids to see that the other person might be different but they are a person too, with charm, dreams and wishes and aspirations just like they are.
From Oatie’s bullying experience, I found the children to be much more able to understand and cope with his disability than the narrow minded parents.
He has come a long way and he’s striding to achieve everyday. I love it when we’re jumping up and down when he just put his shoes one…. it’s those magic moments that are great but pass you by with your able bodied children when they did it. The handprints on the window from Oatie looking outside… I don’t mind those either lol!
I am a proud mum of all three and Oatie has taught me to see the three of them as individuals and cherish each and every bit of their talent/difference and personality.
Love
Mel
xxx
Melanie, I am amazed at your story and glad you had an opportunity to share it. Why the ignorance continues I’m not sure, but hats off to you and Oatie for your perseverance. I think it’s perfectly natural to wonder if your child will be able to live independently when confronted with a disability, but you have clearly taken positive steps to help Oatie have a happy future.
The whole disability paradigm is interesting. I have Asperger Syndrome and consider it a biological and neurological difference, not a disability. But it’s interesting how those lines are drawn. Since the world mostly sees it as a disability, naturally there come the comments about how tough it must be and the questions of whether or not I am happy. I can honestly say that I am.
“Just because he’s physically restricted, he’s not the disabled one. His mind is open, and pure, and wanting to engage life to its fullest. He’s not thinking typically three-year-old stuff about painting a cat. He wants to take on the world.” There are able-bodied people who need to have that kind of attitude.
God bless you, Oatie, and your family. This was wonderful to read.
-Nicole