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Little Lizzie is big enough to be going to Post-Secondary now. I don't know how that happened. In case anyone is still reading here,. I'm using Rolladyke Rambles to show her how to do a few things

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Quiet but Listening

As you've no doubt noticed, I don't post around here anymore. I've even fallen silent on Twitter.

This isn't because I've stopped caring, I've just re-evaluated what my message is to the world.

I will still continue to use this profile for commenting on the blogs which all of you have so candidly written, allowing me tiny glimpses into your lives. I always read, and will make an effort to say more.

But my blog, my message, has moved. If you so wish, you can find me on my new blog, Sass and Spasticity, which is a more anonymous look at sex and disability. If not, I understand. One thing that will continue to be posted here is the Child from Holland series- This will also move to my new blog, but any updates or further parts to it will appear here.

My new twitter can be found here at Sass and Spasm.


Again, I want to thank you all for the last few years of friendship and education and understanding.

I'm still listening. I still care. I'm still in awe.


Yours fondly,

The child from Holland

Ashley/Rolladyke

Apology

This is the response I received from the Motorcycle Ride for Dad in response to the letter I sent them in my last post.

Hi,

I am very sorry to hear of the loss of your Grandfather. I know personally how hard it can be to lose someone close to you from cancer.

We’re sorry to hear that one of our ads has caused you distress, and although that wasn’t the intent I can appreciate how it initiated that response.

You are correct that the objective of the ad is to raise a reaction from people so men understand that they need to get their prostates checked. With over 800,000 Canadian men currently walking around Canada not knowing they have this disease it’s an important message to send. Luckily over 90% of cases can be successfully treated if diagnosed early, but over 50% of men don’t see a doctor on a regular basis, or get their prostates checked. It’s crucial that we grab their attention so they can see what could happen if they don’t get a simple PSA and DRE.

Our goal as an organization is to spread awareness and fund research, so that men can continue to be there for their families and friends for years to come. The chrome and leather grabs the attention of the masses on ride day, the research helps find hope for the future, and the awareness has the potential of saving men’s lives today. That ad is one of many awareness tools we use, and we wanted it to cause a take-charge reaction, because in the end that is what we are asking men to do—react, take control of their health, and get checked.  

Our intent was never to cause pain or guilt for those men, and their families, who have lost their fight against prostate cancer, and we sincerely regret any pain that viewing it has caused.

Kind regards,

[Name Redacted]
National Communications Manager
Motorcycle Ride for Dad

A Father's Day Post- Tissue Warning

This is my grandfather. I took this picture before I turned 10 years old. It still sits on my dresser today.

Today is the 12th anniversary of his death from prostate cancer. 

This is what I saw in the paper today.

Once I picked up the pieces of my broken heart, this is what I wrote

Dear [Name removed for privacy reasons, however it is available on the website listed in the ad]

As the granddaughter of a wonderful man who lost his 4 year battle with prostate cancer on this date in 1999, I was extremely disappointed to find the "There's No Excuse for Dying of Prostate Cancer" ad in the Friday Edition of my local newspaper. I fail to understand why the Motorcycle Ride for Dad- which I had previously thought to be a wonderful organization, a flash of leather and chrome and "Dad power" amid a sea of pink ribbons- would feel the need to trigger guilt and regret in the minds of prostate cancer sufferers and their families on this weekend of all weekends, considering that Father's Day is Sunday, June 19.

No excuse for dying of prostate cancer? That's called victim blaming. Is my grandfather to blame for the fact that he was already in his seventies when his prostate cancer was discovered? Is he to blame for the shame he endured while wearing a catheter and leg bag for four years, the discomfort and infection? Is he to blame for the illness that his palliative radiation brought on as they struggled to get the cancer under control enough to allow him to live his final days free of pain? This very treatment stole the remaining strength the cancer had not eroded and landed him in a hospital bed in uncontrollable agony from bone metastases during his last June, a month that every Dad and Grandfather deserves to look forward to with anticipation of crayoned cards and new ties and socks. Well, my grandfather's last Father's Day card was slipped into his casket by my 5 year old sister, his last socks and tie were purchased for him to wear in his casket... and your ad wants to send the message that this was his fault? Well, there's no excuse for forgetting either. There's no excuse for forgetting that behind every Dad that the Motorcycle Ride is for or has ever been for there stands a family fighting for their hero, or, all too often, grieving the loss of him, and we continue to grieve that loss long after their pain has ended.

I believe I understand the message that you wanted to send with this campaign: That screening and early detection save lives. But words are powerful things, something which I would hope the National Communications Manager for the Motorcycle Ride for Dad would understand. I believe you knew that ad would get read this weekend as thousands of Dads across Canada scoured the paper to rehash Game 7 of the Stanley Cup Finals, for better or for worse. And maybe it caught the attention of some of them- Maybe some of them will get screened now, or will come out to their local portion of the Ride. But it also caught the attention of at least one grieving granddaughter, adding a pang of guilt as I sift through many years of beautiful memories of the only man in the world I would have ever gotten on a motorcycle for, and a man who would have been very pleased to see the Bruins take the cup.

With a broken heart,

Rolladyke


I'll be interested to see what response, if any, I receive, but I really felt like I had to send it.

Hey, You

Yeah. You. Let me tell you something about Blogging. It's a snapshot. And it's a Godsend. It helps get out the words that are screaming in your head- That maybe you can't say to anyone else, not even the people who love you most in the world. Maybe they're angry words, maybe they're sad words, maybe they're deliriously happy words. Maybe they're something you wish someone had said to you. You can click "Publish Post" and put those words out there and leave them in Cyberspace and get back to living your life.

And sometimes, when you put them out there, something magical happens. Sometimes people crawl out of the woodwork of this big thing we call the Internet and they say "Me too" or "I'm listening" or "Have you tried...?" and there's a wonderful thrill of connection and you feel like those raw, painful words, or those silly giddy words, poured out in a moment, mean something to someone else.

Comment, by all means. Challenge, educate, enlighten. But be respectful.

Blogging is a brief moment in someone's life, not a 24/7 live feed. Don't use blogs to judge. If you don't like what you've read, then I'm sure there's a big red x in the corner of your browser just like there is in mine.

"Authenticity" of blogs? Well, okay, but you better be ready to let someone judge the "authenticity" of your painstakingly posed photographs.

((This is not to say that people are not hurt when a blog they have come to read and believe in is revealed to be wholly false, such as about a person who never existed))

There are plenty of pieces- good and bad and mundane- of my life that do not make it to this blog. I am more than what you see here. And I choose to believe that the people behind the blogs I read are more than what they show me.

I'm doing my best, and I choose to believe that about the authors of the blogs I read, too. If you don't, if you can't, then maybe you should stop reading blogs. I know you should definitely stop reading mine.

A Child From Holland Part 3: Border Strip Search

First, a note on this series. When FosterAbba encouraged me to turn A Child From Holland into a blog series I had no idea where I would continue to find material. As it turns out, everywhere.

I also want to acknowledge that this series does have a particular slant, focusing as it does on the differences in citizenship between Holland and Italy. This is only one piece of my own story, let alone the stories of other children from my country. It`s just this is what is coming to the forefront to be blogged about.

Border Strip Search


Occasionally I browse Hopeful Parents, searching for further answers to my continuing citizenship dilemma. My own mother has never talked about her feelings about my experience, so the parents who blog there amaze me with their words...actually, now that I think about it, my mother`s difficulty with expressing how it was to raise a child from Holland may have had something to do with why I found many of my beloved "Blogger Folks." But that's another post entirely.

Julia Roberts's Bodies of their Own was the inspiration behind this installment of "A Child From Holland." I, too, was a child who was often required to disrobe for medical professionals. My earliest physiotherapy sessions were conducted in a diaper only, doctors examinations were semi-annual at least, and these were doctors who, unlike my family doctor who would only look at the throat that hurt or the ear that ached, wanted to see all of me.

I don't remember having a problem with it, or with having an army of people change my clothes. My mother changed me, my grandmother changed me, occasionally even my grandfather changed me before I went to school. He even usually did so with a cheerful exclamation of "Let's skin the bunny!" (Perhaps that's a Newfoundlandism.) When I *did* go to school there were paraprofessionals who took over the job of putting on my coat, taking off my winter boots, changing them for my braces and shoes, even changing me when I had accidents. It was a set of the same four parapros, usually, but there were occasionally substitutes, and I don't recall refusing to change- or even thinking of refusing to change- for any of them.

I had been taught, of course, that my "bathing suit area" was private, and that any touch that made me feel uncomfortable was a bad touch. I had been read all the right books, like The Secret of the Silver Horse and Tom Doesn't Visit Us Anymore. But somehow I knew that medical things were different, that medical touches were to be borne even if they were uncomfortable, that the stitches had to come out or the catheter had to go in, or the stretch had to be held until the count of ten, and I could scream and make it difficult or I could giggle helplessly and it would be over faster.

I didn't realize that some people- people with that magical Italian citizenship- could say no to their doctors- until one day I saw my specialist on the other side of the border.

It was the summer I was eleven, and I had had major surgery on my femurs and hamstrings and hip flexors. I was being very closely followed, every week or so, I think, and I was in a day treatment program. One particular week there wasn't space for me to be seen in Cerebral Palsy clinic, so I was seen in a general Orthopedic Clinic alongside Italian children who had had the bad luck to break bones in the summertime. I was alone, under direction to return to the Recreation Therapy room when I was finished, but the girl on the other side of the curtain was Italian, so she had her mother with her. I still remember that she had surgery for her knee, and she was refusing to take off her jeans so Dr. James could look at where the healing surgical sites were.

I remember thinking that jeans were never supposed to be worn to an orthopedic appointment and feeling a bit superior in that knowledge.

Her mother asked her a second time to take her jeans off, and the girl on the other side of the curtain still refused, Dr. James asked very nicely and explained that he needed to make sure everything looked okay and she still refused. Surely now, thought my little, medically-conditioned brain, someone would *make* her take the pants off, say that they were very sorry but  some things had to be done, but it didn't happen. The next thing I knew, Dr. James was outside the curtain, in the little tunnel between her curtain and mine, taking notes on his little handheld tape recorder,

"Patient ambulating well, but due to intense modesty I was unable to fully examine her."

I know now that that girl's medical appointment was private, but at the time I didn't know much about medical confidentiality. We all had our therapy in a big gym and it was common for older kids to encourage younger kids or for peers to cheer each other on or pressure each other into compliance, so when Dr. James came around my curtain, I demanded,

"How come she didn't have to take her pants off! If I wouldn't take my pants off you'd laugh at me and get someone in here to do it!"

Bless Dr. James, he sat down on the examining table with me and admitted that he probably would laugh if I refused to take my pants off and that he probably would call someone in to do it, but he knew I wouldn't refuse to take my pants off because I was working so hard to get better. Eleven year old Rolladyke was satisfied with this answer.

Now, at twenty five, I still don't know what the real answer is for parents on either side of the border, let alone children. We need to teach children, regardless of nationality, to respect and own their bodies, but we also need to instill that it's important to be honest and open with the professionals that help them, and that part of that honesty means taking off clothes when appropriate and showing the right body parts, like teeth to the dentist and eyes to the eye doctor.  But what I will probably never forget is the difference between that girl from Italy and me.

A Child From Holland, Part 2: Getting Something Out Of It.

I had no intention of making a series of A Child from Holland posts, but Foster Abba asked me an important question- "Then what happened?"- and I realized I had more to say. So here we go. As in other posts, all names that are not mine are pseudonyms.


This is something that's been brewing in the back of my mind for a few days... friendship and love... I went to a small, denominational school until I was 13. There were social pros and cons to that- I had most of the same people in my classes from Kindergarten on up, so they knew me and my walker and my Holland wooden shoes and crazy walking. They knew other things too, though, like how I had bathroom accidents and sometimes got extra "attention" in the classroom from a paraprofessional, which, as we all entered the general insanity of adolescence, just gave the kind of kids who collect ammunition new and different weapons to use against me. I'm not saying I was their only target, I was different, a sickly member of the herd worth turning on, but intellectually I was their peer, and I was supposed to "just" have CP.- Unlike the English Language Learner who was another tortured member of the class I *knew* what they were saying and doing to me, and unlike the student who had the mysterious diagnosis of "Behavioural" I didn't melt down and run from the classroom to escape. (There were days I wished I could.)

All of that is just to say that changing schools at 13 was good for me. I met new people and reinvented myself a little...including buying 5 identical pairs of pants so no one would ever know if I had to change in the middle of the day. And it worked for awhile..until one day, at 14, I was taken aside by my paraprofessional.

"Who walked you to class yesterday, Ashley?"

"Um...Annie." Annie had become a very close friend the year before, and our madcap, giggling dashes to class were commonplace, her pushing my wheelchair through the throng while I balanced a precarious tower of books and binders on my lap- hers and mine, usually 6 or 7 books in total and the corresponding binders. It had seemed a good system- my Individual Student Support Plan (my province's name for an IEP) termed it "Self Directed Peer Support." My paraprofessional was still available, but usually we left her in our wake, planning lunch or the upcoming weekend as I peered for obstacles around the teetering pile of books.

"Well, that won't be happening anymore."

"Why?" I looked around- Annie hadn't arrived in the classroom yet, and, already prone to anxiety, I began to think the worst.

"Her mother called the school yesterday and demanded to know why it was Annie's responsibility to push your chair. I have to do it now, I'm sorry. I'll see you at 9." She slipped out, a nice enough woman who I liked okay, just as Annie found her way in and took the desk next to mine.

"You could've told me!" I burst out.

"I didn't know." Annie promised, looking right at me. "Mom took me to the doctor yesterday and he asked about my screwy thumb." Annie's thumb had been broken years before and had healed strangely. It didn't hurt her, but the doctors were trying some strange things with bracing that made no sense to either of us. "He said it still isn't straightening, and asked me if there was anything strenuous I was doing. I said no, but Mom started freaking out about my pushing your chair. The doctor said it probably made no difference, but she told me today she'd called the school, I'm so sorry."

--

Little did I know this was essentially the end of Annie and me. Her mother had decided, plain and simple, that I was a burden. That her daughter wasn't "getting anything" out of our friendship and was being taken advantage of. As a result, Annie was no longer allowed to visit my home on the weekends or to talk on the phone. She kept assuring me- and I believe she meant it- that I had done nothing wrong, but no teenage girls' friendship can flourish without girls nights and telephone conversations...and our days of giggling in the madness of the halls were over- Once again I was picked up by my adult parapro 5 minutes before each class ended and deposited in the next one. Annie tried to accompany us, but it wasn't allowed. I was "the different one" again...

My first love's mother also had this problem. We were fine for awhile, but then it didn't matter what either of us said, there was "inequality" and "deserving better" and we drifted apart.

Now, I have Immodest-Lady...and her mother has been the most blatant of all...but gifted with maturity and romantic love, she's fought back, refusing to believe it, reassuring her mother (and me) of all the wonderful things I do for her and for our household, even though they might not be as visible as her helping me with some caregiving tasks...

But all of this leaves me wondering- Do the mothers of neurotypical "Italian" children view all friendships with such scrutiny? Do they teach their children that friendship isn't a give and take, but is, instead, an opportunity for advancement? I hope not.

I wish I could take the three mothers in the above stories- Annie's Mom, First Love's Mom, and Immodest Mom, and ask them, if they were mothers of Holland children instead, wouldn't they want cross-border friendships for their children? Wouldn't they spend nights begging The Powers that they believe in for just one person to *see* their child?