The internet all looks very yellow from where I’m sitting today. A significant percentage of people I know have changed their user icons to something yellow, are posting pictures of themselves wearing yellow T-shirts, or are baking yellow cakes with yellow icing1 all in the name of “awareness.”
Today, May 6th, is Wishbone Day, the global awareness day for my impairment; osteogenesis imperfecta. I have no idea why the founders of Wishbone Day thought yellow would be a good color, especially when you take into consideration that there is already a color that’s very closely associated with OI: Blue.
The protein that the body doesn’t form properly in osteogenesis -- type 1 collagen -- is the same protein that makes the whites of your eyes white. This means that a great many people with OI have scleras that are blue.
Whenever I meet a doctor, my eyes are always the first thing they want to see upon learning that I have OI. And I’m not just talking about doctors involved in my own medical care. I’ve had requests to look at my eyes from my elderly and osteoporotic dad’s doctors at the fracture clinic (because if you have a daughter that knows all about bones, you take her with you when you need to see about a broken leg). Even if I strike up a conversation with someone that happens to be a doctor in a pub, they want to know about my eyes the second I mention osteogenesis.
Choosing a color that’s anything other than blue for an OI awareness day seems a bit off the mark. The only reason I can possibly imagine for choosing yellow to represent OI is because that’s the color of our teeth:
My teeth aren’t that color because of the copious amounts of tea I drink. (Hey, I’m English. Drinking tea is what we do). Dentinogenesis imperfecta causes funny-coloured dentin which gives our teeth a yellow appearance.
There are lots of visible traits about my OI that I actually like. I think my triangular face is quite pretty:
I think my previously pictured eyes with their blue scleras are beautiful and unusual. I even think my right forearm with its bent bones is really quite adorable:
But the yellow teeth that look like I smoke 40 a day? Not so sexy.
WHAT DO AWARENESS CAMPAIGNS REALLY DO FOR PATIENTS?
I also struggle to grasp how much awareness could actually be raised by changing my Twitter userpic to the Wishbone Day logo for 24 hours. And if it did raise any awareness at all, I have to wonder if that awareness would be instilled into people for whom the newly gathered knowledge could make any difference for those of us with OI.
When I was 8, I was in hospital with a broken tibia and fibula and I was on the same ward as a boy with OI who’d broken his femur. I spent quite a lot of time chatting to him mainly because he was 4 years older than me so I thought he was all cool and grown up. He told me about the time when he was a baby and his mum had left him outside a shop in his pram while she nipped in to buy something.
In the couple of minutes his mum was gone a total stranger had decided he “looked hot” and took his cardigan off, breaking his arm in the process. You could say “Well, if she’d known to look for a triangular face, blue scleras and limb deformity she’d have realized he had OI and not touched him.”
But you know what? Taking clothes off of a baby you don’t know is creepy and you just shouldn’t do it. That’s not an issue of OI awareness; that’s an issue of “keep your hands off other people’s kids you damn weirdo.”
Another argument you could make for having a bake sale in which you peddle yellow cakes is that OI awareness could make us safer as we go about our daily lives: If people can recognize the characteristics of OI then they can avoid walking in to us in the street which could potentially cause a fracture.
The issue here is that OI isn’t the only condition in the world that causes easy injuring. My personal circle of friends includes someone with epidermolysis bullosa and several people with Ehlers-Danlos syndrome. These are all people who injure just as easily as, if not easier than, me. These conditions all have very different visible characteristics to OI so the list of things to look out for before crashing into someone lest you cause them harm isn’t universal.
And besides; if you can avoid walking into someone: Do. If you’ve got the time to scan for diagnostic characteristics then you’ve got time to take a step to the side to avoid smacking into them. In fact, as a general rule in life, just try to avoid crashing into people wherever possible. It’s the polite thing to do.
Grabby people are a problem that all disabled people regularly come up against. You’ll be pushing your wheelchair along the street, minding your own business, and a total stranger will grab the back of your chair and start pushing you. It’s as if you have no right to personal space if you’re noticeably impaired. When you yell at the grabber their response is always “But I was only trying to help!”
Newsflash: If you want to be helpful you ask “Do you need any help?” And then you respect that person’s answer. Would you come up behind a non-disabled total stranger walking along, pick them up, and carry them off without asking if their legs were tired and they wanted a rest for a minute? No? Then grabbing a wheelchair user and pushing them away without asking if that’s what they want is similarly off-limits.
Osteogenesis doesn’t just cause bones to break easily. Collagen is found in all body tissues. Crappy collagen in tendons and ligaments means that the joints of us OIers dislocate easily. I once had my shoulder dislocated while shopping on my local High Street by a total stranger grabbing the back of my chair and pushing me along.
“A-ha!” you might be thinking. “There’s a reason for OI awareness! If she’d known to check out the color of your scleras then she’d have understood the damage she could have done and made the decision not to grab you!”
Firstly: She came up behind me. As much as I’d like to have eyes in the back of my head; I do not. Secondly: Do you think someone with so little respect for me that they’re willing to just whisk me away without speaking to me would give a damn? And finally: Getting injured by handsy strangers isn’t reserved for people with impairments that cause easy injuring.
Grabby strangers could easily tip anyone out of their wheelchair by trying to push them over an uneven surface if they’re not looking for cracks in the sidewalk. Getting a broken nose from being tipped out of your wheelchair isn’t limited to people with brittle bones.
You might be wondering why I’m ranting against Wishbone Day rather than keeping my little misanthropic mouth shut. If other people want to don a yellow T-shirt for the day, why am I raining on their parade? They’re not causing any harm with their wishbone Facebook user pic.
WHO REALLY NEEDS TO BE AWARE OF OI
There’s a good reason why the whole “wear yellow” thing bothers me so. It’s because there are two groups of people among whom there is a huge need to raise awareness of osteogenesis imperfecta; and neither of them are going to learn anything by me hoovering down yellow cupcakes2. Because the need for awareness amongst these two professions is so crucially important, any “awareness” exercise that doesn’t target them is just a desperate shame.
Osteogenesis causes bones to break easily, joints to dislocate easily, bruises to occur easily because of the poor collagen quality in blood vessel walls, and skin to scar easily because collagen exists in skin too. All these factors mean that OI is very frequently mistaken for child abuse.
This means that doctors and people who work in child protection really need to learn how to spot the difference between a child with osteogenesis imperfecta and a child who has been beaten.
I was lucky. My mum had OI too, so my parents knew that there was a 50% chance I’d inherit it. It means that the closest my parents ever came to being accused of abuse was the first time I broke my arm. My mum took me to Accident and Emergency3 and explained that I might have OI. The nurse asked my mum with suspicion “And why do you think that?” As if my mum had just gone through the encyclopedia looking for excuses to get away with child abuse.
“Because I’ve got it,” was my mum’s reply.
My mum and her parents were unbelievably lucky. In the late 1930s and early 1940s, very little was understood about OI. The doctors that treated my mum didn’t even know that it was a collagen disorder. There was no such thing as genetic testing that could tell you definitively if the child had OI or not and the easy-to-spot signs like “is the child always drenched in sweat?” weren’t well known. It’s almost a miracle that my maternal grandparents were never accused of child abuse.
There are many families that aren’t so lucky. Many families have to suffer the trauma of being ripped apart because a doctor treating a break (or multiple breaks) wasn’t clever enough to check for osteogenesis and called the police and social services4 instead. Then the family’s misfortune continued by getting referred to a social worker that didn’t say to the doctor: “Did you check for osteogenesis?”
I feel that I need to explain at this point that I obviously don’t think that endangered children should be left in a potentially unsafe environment while a doctor waits weeks for genetic testing to come back from a lab. You have to remember that before DNA was decoded, children like my mum and I were diagnosed purely on our symptoms like osteopenia, blue scleras, the triangular face, the barrel-shaped rib cage, always being drenched in sweat and being of restricted growth.
When doctors see a child with multiple broken bones they should spend 30 seconds checking the child for such features before reaching for the phone. If they can’t see any features of OI, then obviously they must call the police. But for the sake of that family, the doctor must check first. If it transpires that the child is being abused, then no harm came from checking. The child was safe while the doctor was in the room looking for OI features because the doctor was there to offer protection.
False abuse accusations are usually the story whenever you get an OI-related storyline in fiction. “ER,” “Home and Away” and Jodi Picoult’s book “Handle with Care” have all covered the subject. In these stories the child has eventually had their diagnosis sorted and the child has been returned to the parents. The family was put through the unnecessary stress, and the child was denied access to their parents at a time when they needed familial support (because breaking your bones really bloody hurts and you want your mum to hold your hand) but justice prevailed in the end.
In real life, families smashed to pieces don’t always get put back together again, in much the same way that broken bones don’t always go back to how they should be when they’re smashed really badly. There have been cases where the child was subject to an irreversible adoption order before being diagnosed. Because of the irreversible order, the child cannot be returned to their innocent parents. The family is ripped apart for good. Using Wishbone Day as day of training people with those jobs could spare families the pure despair of being torn apart.
Wishbone Day has been happening for a few years now, but I’ve never heard of any events aimed at the professionals who really need the awareness drummed into them. I’ve even suggested training for doctors and social workers to people in positions to organize such training; but I’ve been brushed off because they perceive dressing in yellow for the day to be more important.
If Wishbone Day evolved into something that really made a difference by targeting people who need the OI awareness to do their jobs and keep kids with OI safely with their parents, I’d get behind it in a nanosecond.
I’d even be willing to play guinea pig for a day to help these professionals learn what osteogenesis looks like. I’d happily let them gaze at my blue scleras and prod all my bent bones for the sake of keeping families together.
But will I take part in Wishbone Day in its current form? No. Changing my Twitter icon to a wishbone won’t achieve anything. And as for T-shirts: The colour yellow looks ridiculous on me. I look much better in blue; it works so well with these eyes.
1. Or “frosting” as I believe you call it on your side of the Atlantic. Return
2. Though don’t get me wrong; I’ll eat any cake put in front of me. Return
3. The British name for the thing you call the Emergency Room. Return
4. I gather from my watching of American TV shows that the department we call “social services” is known as “child protective services” on your side of the pond. Return