I wish somebody would tell my body that it has to pick just one disability….

So, as you know, a few days ago I was able to work with an organization to reschedule a trip to the fall. However, during that online conversation a subject came up that is becoming of more and more of a concern to me. Why do I have to choose which of my disabilities is the one that needs helping? When they all do.

On this occasion I was booking an accessible room. For some reason though, the hotel management in question have made the assumption that somebody who is deaf wouldn’t also have mobility issues. So I had to choose. Did I want a room with light alerts, rather than sound, or did I want an accessible bathroom?

At this point, I have to balance my safety. Which is more important? I will have Kai with me. His sound alerts are great for sounds he knows but I have no idea what this hotel’s sound alerts would be. It’s too late to find out that he doesn’t recognize their fire alarm as an alarm, when it’s already going off and I’m tucked away in our room completely oblivious to the fact that it’s even going off. Therefore, I decided that having light alerts would have to be the priority.

That now means that I’m going to be at a greater risk of falling. Instead of having a walk in shower, I’ll have to climb in and out of a bath tub in order to take a shower. Hopefully, there will be handrails, but most likely not.

Kai isn’t old enough to do brace work yet (Service Dogs shouldn’t be taught to take weight until their growth plates are fully closed, and their joints have been verified as sound by x-ray, after they’re two years old) so he won’t be able to help me.

As a result I’ll have to be very careful and slow.

There will be less room to move around the room and most likely it will be carpeted, increasing my risks of knocking myself (and fracturing) and of being exposed to allergens.

Whereas a room set up for mobility – typically in the form of a wheelchair – usually has a smooth floor, more space to move around and a walk in/ roll in shower; just as I do at home.

Then we come to medications. Thankfully, most hotel rooms come with a fridge as standard these days. However, every now and then you come up against one that doesn’t and it has to be a special request. To be fair, most hotels won’t charge you for it once you explain that it is for medical reasons. However, when added as a special request they often end up in odd positions that are difficult to use.

As you can see, booking an accessible room is a complicated issue. What I really don’t understand is “Who decided that people only have one disability?”

My own experience is that for many of us, especially those of us with invisible disabilities, we rarely have just one.

Our body systems don’t work independently of each other. My hearing problems effect my balance; that impacts my mobility. In my case my primary disability – Osteogenesis Imperfecta (OI) – has an impact on almost every system within my body. It is one of the causes of my deafness, and it is the cause of my scoliosis, mild PVI, and overly sensitive eyes to light.

Add in my fibromyalgia, severe brittle asthma, Ménière’s disease, intermittent Blood Pressure issues, Severe non-combat Complex PTSD, Traumatic brain injury with Prosopagnosia, Diffusely fatty liver (non alcohol related), Irritable Bowel Syndrome with gluten and lactose intolerance and of course my favourite – anaphylaxis – and you can probably see that there isn’t much of my body that isn’t impacted by my conditions.

Yet when I’m asking for disability accommodations I have to choose. I can be deaf, or need mobility support. I can be blind or allergic. What I can’t be, apparently, is in need of more than one type of support.

Bizarrely it’s not just the hospitality industry that makes this assumption. How many of you have seen signs in your doctor’s waiting room stating “One problem per appointment”?

It’s increasingly common to see. The point isn’t that doctors don’t recognize that we have more than one condition; the issue is that they need more time allocated to us if we need to discuss more than one. However, that doesn’t seem to be made very clear to patients.

In my case, my life feels like a tangled ball of string. Most of the time, my doctors and I, we just about hold it together. The pieces are carefully balanced and intertwined and as long as no one piece of string is tugged on too much it pretty much stays together and rolls along reasonably smoothly.

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But then, something happens that drags one of those pieces of string out of the ball and everything that it touches gets hurt along the way. Occasionally, if it happens fast enough the impact is fleeting and we simply loose that string and my ball readjusts.

A good example would be my getting a common cold. It has a big impact on much of my body but once I’m over it, my string continues as usual. It’s like I just need to let the ball rest, with a little bit of support, before it can continue on its way rolling through life.

On other occasions the string that was pulled turns out to have been fundamental to the structure of the ball. Consequently the ball looses its integrity and shape and it takes time to find out how to put it back together.

Sometimes we need to carefully insert a new support into the ball to reinforce the structure.

Sometimes the ball looks less and less like a sphere and becomes rather more cumbersome for rolling along.

Sometimes the ball comes to a complete stop, while we take stock and work out how best to help it regain integrity and purpose. That’s where we’re at right now. My ball is looking more like a collapsed pile of strings, with no obvious form, and a couple of new strings have been added, and we’re not quite sure how they fit in with the other strings yet.

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Hopefully with a bit of help from the experts in putting the ball back together in the forms of treatment, medication and understanding my ball will get reformed shortly and I’ll continue on my way rolling through life.

A little less smoothly probably but once more, able to roll.

Getting there though brings me to the “Spoon Theory”.

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Christine Miserandino came up with this theory some years ago and it really resonates within the chronic disease community. You’ll even see people with patches on their Service Dog vests that refer to spoons.

Basically the theory goes that when you have a chronic disease you start the day with a limited number of spoons, servings of energy if you like. Unlike healthy people, who often have an unlimited supply of spoons, or are able to create new spoons pretty easily, we only have a small number to begin with.

From the moment we wake up, assuming that we slept to begin with, we have to decide how best to spend our spoons that day. Some days that means that we don’t shower because we know that later in the day we’re going to need the ‘shower spoon’ to cook dinner.

We don’t get to do both.

We have to choose.

If we are daring enough to try and borrow a spoon from the next day then we know that we’ll really be paying for that with reduced spoons for several days. Sometimes it’s worth it. Sometimes it’s not.

Kai helps me to use my spoons more effectively. Instead of my needing to use a whole spoon to pick something up, when I’ve dropped it, Kai picks it up for me. Now when we’re at home, that ‘s a nice easy gain. When we’re out in public it probably doesn’t save me a whole spoon as I then have to deal with all the comments and attention of people who can’t seem to believe that a dog can be trained to pick things up and give them to you on command. It can be as simple as his leash or as complicated as  a dime. Regardless it is apparently incredible to see, for many, and leads them to think that it is just fine to ask me:

“What’s ‘wrong’ with you?”

“Will you train my kids/dogs? “

“Can I buy him from you?”

Those comments are just for starters. Some are far more rude and invasive.

Some days dealing with that kind of interaction only uses a part of a spoon for me. Other days, it can use several spoons. I just don’t have enough energy to deal with the education needed.

So I’m putting a plea out there to the hospitality industry first – please stop making us choose between our disabilities when requiring accommodation. Please set up more rooms to be truly accessible by people with all kinds of difficulties, often within the same body.

To the world, in general, my plea is to think about those around you. Do you know people dealing with chronic disease?

If so, what can you do to help them conserve their spoons today?

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Finally, I do wish that somebody would inform my body that it’s only allowed to be affected by one condition at once.

Just think how many more spoons I’d have!

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Butterflies… Why butterflies?

So when I was looking back at my first week as a freelance writer (that feels so good to write) I debated changing the name of my Blog to something more informative than simply “Butterflies”. However, anything I came up with was rather long and as I was able to obtain a domain name for my Blog using Butterflies I decided against it.

But I did say that I’d explain the significance of them for me. So here goes…

Butterflies have multiple meanings for me:

The first meaning is the one that most people think of. The emergence of the butterfly from a chrysalis is often seen as the personification of new life. I have started my life over again many times. Either literally, immigrating from England to Canada, or after a marriage breakdown; or figuratively as I’ve matured and developed emotionally and spiritually.

Further, I like the recognition of the fact that it is hard work for the butterfly to emerge from the chrysalis and that the caterpillar has to be willing to change.

The second meaning for me is one that many people are never aware of. Most butterflies are deaf. They hear through vibrations yet the world around them doesn’t recognize this. So for me, the butterfly is a representation of my deafness, and my ‘passing’ in a hearing world. The Canadian Hearing Society, alongside many other organizations around the world that support the deaf, use the butterfly as logo as a result.

The third meaning is that of the Butterfly Effect. This is the theory that a tornado in Texas could be caused by a butterfly flapping its wings in Brazil. Simply, that one small thing can have a huge impact even on something far away and seemingly unrelated. As somebody who lives with multiple health conditions my life feels like the epitomization of the Butterfly Effect. My current situation is a case in point. An anaphylactic reaction 6 weeks ago is still causing an impact in all other areas of my life.

I’ve noticed that butterflies are quite often seen as a symbol of hope by many  other people with chronic health conditions too.

More recently, when I added fibromyalgia to my list of diagnoses I was amused to find that the symbol used for raising awareness of this condition is a purple butterfly. I was already aware that a teal butterfly is used to raise awareness of Post Traumatic Stress Disorder (PTSD/CPTSD) and a purple butterfly for Rheumatoid Arthritis. So with a handful of different colours, butterflies have a fourth meaning for me.

The fifth reason is that their symmetry appeals to me. While there are asymmetrical butterflies, they are unusual, and the majority of butterflies do have identical wing patterns. As somebody who likes structure, rules and order this has great appeal to me. I loved the art classes in school where we would create butterflies with different art techniques and would get incredibly frustrated if my butterfly did not come out truly symmetrical.

Lastly, I simply find butterflies beautiful. So much so, that on a recent trip to Mackinac Island, in Michigan, USA I couldn’t resist visiting the butterfly house.

It was the first time that I had taken Kai, my Service Dog, anywhere like this and I was quite prepared to have to leave with him immediately. We’d already experienced a ferry ride, horses, bikes and carriage rides for the first time that day. However, he was incredible.

I suspect that he is now the focal point of a number of tourists photographs that day.

He simply walked around the house with me, then lay in a down at my side while the butterflies flew all around  landing on both of us numerous times.

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When we left, the attendant was laughing as she commented that it was the first time that she’d had to do a hitch-hiker butterfly check on a dog!

Anyway, it’s a short post today as I’ve been working on some of my other new writing projects which hopefully I’ll be able to post successes about in the next few weeks and months.

Hopefully this week will bring some answers for my ongoing health issues and the impact of the Butterfly Effect will start being positive for my health, rather than negative!

Reflections on my first week as a non-academic writer.

So it’s day 7 and, so far, I’ve managed to keep my personal commitment to write and post a blog every day.  Including today’s post my word count has varied from 1,423 to 3,306. I have therefore averaged 2,000 words a day.

  • Reflections on my first week as a non-academic writer. 1,998
  • Happy Canada Day! Reflections of an immigrant. 1,870
  • Deafness is a continuum…. it’s not all or nothing. 3,036
  • When did compassion, courtesy and general professionalism disappear? 1,423
  • So I made it to Tuesday…. despite Grey’s Anatomy!  1,870
  • So when did it become OK to pretend to be disabled? 2,831
  • My first Blog as a non-academic author. 2,816

My subjects have been pretty varied but can generally be described as being centred on the theme of:

My experiences navigating life with invisible disabilities, with the support of my Service Dog; while also recognising the fact that I am an immigrant to Canada, and not indigenous.”

I did think about changing the title of my Blog to reflect this, but it would be a very long title! Instead I decided that I’ll stay with “Butterflies” and that I’ll explain the meaning behind that in another post.

So let me come back to writing as a non-academic. When I write in my academic role, it’s a component of my job. I don’t get paid for it, besides my academic salary, and in fact with the move to Open Access in recent years I now have to find funds to pay for the editing and publication costs for many journals, which range from hundreds to thousands of dollars, per article.

I also undertake huge amounts of blind peer review for a wide variety of journals and conferences each year.  This is a major component of being an academic. The phrase “Publish or Perish!” is hammered home from the moment you start post-graduate studies. You’re only ever as good as the last article you had published.

You can have changed national policy with the results of your research, literally your research can have saved lives; but if it wasn’t published in a high impact journal it can count for nothing when it comes time for your performance review.

Books, you’d think that they would count for something? They’re great for your ego but, having written, and published two books: the English Going Paperless: A Guide to Computerisation in Primary Care in 2001 and the Canadian Edition Computerization and Going Paperless in Canadian Primary Care in 2004 I can assure you that they are a ton of work. That that even with pretty decent sales of both editions I didn’t make enough money to cover the cost of the accountant I had to hire to do my tax returns! Also, academically, because they’re not peer reviewed like journal articles, you don’t get a lot of credit for them either.

The only way that you can make money, as an academic writer is to write the definitive textbook on a subject that is exceptionally popular at Universities throughout the world and to provide it in a variety of formats to meet current demand for e-books, and online bonus material as well as actual paperback or hardback books. Oh, and keep it completely up to date at all times. As you can imagine, that doesn’t happen often.

However, having been a member of a number of different online forums for non-academic writing for an entire week now I’ve learned a few things about this kind of writing. The first is that word count is incredibly important.

  • Writers use it to hold themselves accountable to themselves, and others, for productivity.
  • Writing competitions and calls for submissions use word counts to set boundaries for what is acceptable and what’s too long or too short.
  • Writing is often paid for by the word.

That last one was news to me. I’d always assumed that writers were paid on a project basis and while that certainly does happen, the majority of work seems to be paid either by an hourly rate or per word.

Rates of pay vary considerably. The lowest that I’ve come across this week is $0.03 per word for Ghost writing for SEO (Search Engine Optimization) services for freelancers first starting out. Once, a reputation has been built that rate of pay increases to about $0.25 per word.

Now as an hourly rate, that can be pretty good, or pretty poor, depending on how fast you write, how many edits you have to do and how much research is involved.

So let’s take a typical 500-word piece written as a ghostwriter for SEO services. At the lowest rate of $0.03 per word that’s $15.00. As Ontario’s minimum wage for Homeworking is currently $12.40 per hour (rising to $12.55 on the 1st October 2016) you can quickly see that as long as you can complete the piece in an hour, you’re making about 20% more than minimum wage. Of course, the longer it takes you, the lower your pay. Inversely, if you get pretty good at it and can knock out that same piece in 30 minutes you’ve just increased your rate of pay to $30.00 an hour. Which is above the national average of $25.00 per hour rate for Canada, as of 2015.

Now this all sounds well and good until you realise that freelance writing is rarely going to bring in a regular income, unless you’re fortunate enough to get contracted to write for one, or more, organisation(s) on a regular basis. For example, writing an article for a newspaper every other week.

The good news is that this kind of writing does bring with it an increase in pay to an average of $0.50 – $1.75 per word.

Ghost writing for SEO services seems to be the bottom rung on the freelance writing ladder, where you do actually get paid. A lot of writers start out this way. It’s a good way to develop your writing skills, increase your productivity and get paid. However, the downside is that you don’t get credit. So if you’re writing because you want to be the next Stephen King or J.K Rowling then Ghost writing isn’t for you.

It also raises an ethical question. When you work as a Ghostwriter somebody else (often a corporation or business) will be representing your work as theirs. Now, this can be a good thing. If your “own voice” is distinctive and you want to develop your writing in a specific genre, not being associated with pieces that you’ve ghost written may be exactly what you need as you hone your craft. Ghost written SEO pieces tend to be pretty bland in style, and aimed at optimizing the use of key phrases and links to ensure that specific websites get selected by Internet search engines; and ranked highly by them. They’re about funnelling attention to a website, rather than entertainment.

An alternate route to making an income as a freelance writer is to submit pieces to highly popular forums with great readership, but that don’t pay you at all. However, you do get to work with professional editors and start to get your name known. Over time, you can turn this into paid work. Writing letters to the Editor or submitting articles in response to calls for submissions from such organizations is how writers get started here.

Another method for converting non-paid work into paid work can be achieved by getting your own Blog recognized to the point that companies, like Google, pay you to include links and reviews on your site and you get a small fee for every ‘hit’. Again you’re not likely to get rich but you can make a reasonable income if you have the time to keep a Blog active and timely on a daily basis.

The ultimate goal for many writers, of course, is to earn enough money to give up their day job and write full-time. This is where we hear the apocryphal stories of people writing books in the middle of the night, and receiving hundreds of rejections, before finally getting a publishing contract and becoming millionaires over night. However, multi-millionaires like Stephen King and J.K Rowling are few and far between.

While there is a community of writers able to make a full-time living writing it is important to remember that the average income in Canada for fiction writers is $500 per year in royalties. Consequently, you’ll soon see why so many writers never do give up their day job and why that SEO ghost writing suddenly looks a lot more appealing again!

So where am I at? Well, my Blog’s getting a few hits a day and a small, elite, number of people are following it faithfully. However, to really get it recognised I need to move it to a different host, as opposed to the free one that I get with my Shaw Internet service account. I’m exploring options for this before I have much more content that would make it harder to move.

I also understand that I should probably have a more specific focus if I do this so I’m debating whether I want to move it at all. I’m enjoying writing it and I very much appreciate the comments that I receive from those reading my entries. However, it is pretty much a stream of consciousness, rather than a targeted piece of writing, and I don’t think that I want to change that at this point.

However, several of this week’s entries really hit home for people.

My first one resulted in my being sent a message from an ER physician, in the US, who was going to go into work that day and insist that:

  1. They check all sprays and cleaners for scents and ‘natural products’ such as citrus, and get rid of them, and
  2. That all allergies now be documented on admission to ER and that staff would be informed immediately that somebody was present with specific allergies and that they needed to check their drinks, snacks etc. and that of patients in the waiting areas.

So hopefully, at least in that ER, I wouldn’t continue to be exposed to my allergens on admission! That’s a win that will likely save somebody’s life one day!

Another entry resulted in many people contacting me to thank me for educating them on why it’s wrong to just call your pet dog, a Service Dog, to gain access rights. They knew that it was wrong but nobody had ever explained to them just why it’s so offensive to the disabled.  Now they know, and if each of them discusses it with just one other person the word will spread.

Several readers encouraged me to submit another of my of my entries to a national newspaper in the form of a “lived experience essay’. I did, and I’ll hear within the month if it’s been accepted for publication. Fingers crossed!

I also came across a call for submissions on choices around becoming a mother or not, for women over 35. As an adoptive mother, as a single parent, of an older child I have a pretty unique experience. I submitted an essay in response and will hear in the next few weeks if this will be published in a special edition later this year.

Then finally, I decided to try my hand at Ghost writing for SEO services. Today, I received my first payment!

USD$15.00 for one article!

I’m definitely on the lowest rung of that ladder!

It’s not going to break the bank. In fact, given my need for soy milk it will probably only buy me 3 cups of Starbucks™ coffee.

However, today, one week after realising that if I want to be a writer, I just have to write; I am delighted to say that I am now a freelance writer who has actually been paid to write!

Who knows – maybe I will be the next Stephen King or J.K. Rowling?

Happy Canada Day! Reflections of an immigrant.

So today marks just over 13 years since I immigrated to Canada from England. In June 2003 I shipped 10 boxes, 4 suitcases, a package of pictures and the contents of my office from the North of England to Vancouver, British Columbia, Canada.

My dog, Molly I, was meant to have made the trip with me but unfortunately a few months before, when having vet checks as part of the process for bringing her, it had become apparent that she was riddled with arthritis and in a lot of pain. Having been my faithful companion through a massive car accident in 2000 and supporting me through my long recovery, it was time for me to put her needs first, and so with her head on my lap she crossed the Rainbow Bridge.

So, a few month later, I came to Canada on my own. I’d been recruited by the University of British Columbia to join the Centre for Healthcare Innovation and Improvement. Unfortunately when I first arrived in Canada there was a delay with my work permit so I couldn’t actually start work until mid July. I had rented an apartment, with the help of the wife of one of my new colleagues, and was living in Coal Harbour within walking distance of Stanley Park.

Unfortunately in my reading up on Canada there were a few things that I had missed! The first I am now very embarrassed about. When I was applying for jobs, in 2002, I hadn’t actually realised that Canada and the United States of America were different countries. I’d grown up just labelling the continent ‘North America’ in geography classes.

Thankfully it didn’t take long for me to realise the difference and to understand that calling a Canadian ‘”American” can be as insulting as calling me European. I’m English. British if I have to be. But I’m not European. Which interestingly has far more meaning right now after the recent Brexit referendum.

The second fact that I’d missed was Canada Day!

So on July 1st 2003 I’d been in Vancouver for a few days and was slowly working things out. I’d got past the fact that all the light switches are upside down, that living rooms don’t have centre-ceiling lights (and that the light switches in living rooms work sockets that you plug lamps into instead). I’d even got used to driving an automatic vehicle on the wrong side of the road and that red lights, no longer meant stop until they turn green; they just mean stop until you can turn right, or left (if it’s a one way street).

However, somehow I’d missed the fact that July 1st was a special day. So that day, I got up and headed into the Children & Women’s Hospitals to carry on unpacking boxes in my new office. Which, by the way, had been used in the making of the X-Files!

Now, I did wonder a little where everybody was but, being a hospital and the fact that it was early morning I just assumed that my colleagues, as they were almost all medical doctors as well as researchers, were busy with morning rounds. As for the administrative staff, I knew that the Centre Admin Director was away for the weekend, as she’d mentioned it earlier in the week, so I really didn’t think twice.

A few hours later my office is starting to look pretty good and I decide to head home. This is when I start to realise that something might be up. In the few hours that I’ve been in the office the streets have turned red and white. There are people sat on the side of the road and chairs are lined up along the roadside. Street vendors are all over the place and balloons are drifting in the sky.

As I turn onto the street where I can usually access the underground parking for my building I come up against a barricade and see Royal Canadian Mounted Police in real life, for the first time. From the driver’s seat of a car, those horses are HUGE!! The RCMP officer waves me on. The problem is that I don’t know where I’m being waved on to.

Thankfully, he must have recognised my confusion and he waves over an officer on foot patrol who clarifies with me that I live just a few yards down and kindly explains that I should have received a notice informing me that the road was going to be closed for several hours that day, but that he’d make an exception and let me through the barricade to get home. I suspect that he realised that if he didn’t let me through I didn’t have a clue what to do or where to go and would probably cause more confusion in my ignorance!

A little later, and I’m home and decide that I’d best find out what all the fuss was about.  I soon learned that July 1st was “Canada Day” and that it is federal statutory holiday celebrating the anniversary of the July 1, 1867, enactment of the Constitution Act, which united three colonies into a single country called Canada within the British Empire.

Being English I’d never celebrated a country’s independence before.

The closest I’d come would be Guy Fawkes and Bonfire night on November 5th.  Which is a little different, as Bonfire night is about commemorating the safety of King James 1st from the Gunpowder Plot in 1605. The event is celebrated every year with fireworks and burning effigies of Guy Fawkes on a bonfire.

Though, I do wonder, alongside many of my compatriots, whether we’re celebrating Fawkes’ execution or honouring his attempt to do away with the government!

Anyway, I headed out into Vancouver and thoroughly enjoyed the parade and celebrations.  However, in my naivety at that time I had no idea of the complexities and concerns of Canada’s history on this day.

A few years later and I’m studying Canadian history in preparation for my Citizenship exams. This is when I first started to comprehend the completely different cultural perspective on citizenship that exists in Canada to that which I had grown up with.

As somebody born in England, I’m English.  My ancestry probably includes Scottish and Irish heritage given my red hair and pale skin and if I go back far enough I’m sure that I can probably trace my family back to the Roman Empire via a few Vikings along the way.

In fact, I grew up learning history that included the Vikings, the Elizabethans, the Tudor and Stuarts, and the Romans; places like Stonehenge were all around me. History was all around me, always. I thought nothing of the fact that the first house that I ever owned was over a 150 years old and was a 2 up, 2 down row house built to house the mill workers over a century before. I was just grateful that one of the ‘2 up’ rooms had been split in two so that there was an indoor bathroom as we still had the outhouse/privy in the back yard!

My connection to my country was just innate. Nothing that I ever thought about or really considered. My roots were long and went back centuries.

Then I came to Canada and heard people describing themselves as Scottish or German, but when I asked they were often 2nd or 3rd generation Canadian, and had never even visited these countries that they claimed as their heritage. I found this confusing.

Now I was reading about First Nations and the European settlers and the resulting treaties. It sounded very polite to me. Where were the stories of rape and pillage? Where were the stories of continents being conquered and constant changes in monarchies?

It took time for me to understand. It took getting to know indigenous peoples on a personal level to realize that while it may be described as a far more polite process; the reality is that the same domination of one culture over another happened. That cultural genocide was taking place in what to me, before, had just been a small footnote in my history books.

I took the time to learn, to ask questions, to explore Canada’s history and heritage.  I learned about the First Nations Métis and Inuits who occupied Canada long before Europeans ever set foot in the country.

Then in 2009 I was offered a unique opportunity. I had moved from Vancouver, BC to Edmonton, Alberta in 2006 to be appointed as the first Research Chair in Western Canada in Health Informatics with the University of Alberta. Having spent 4 years running a multi-million dollar research group I was interested in a new challenge.

Algoma University had recently gained independence in 2008 and was looking to hire a Research Chair to establish and run a brand new Health Informatics Research Centre for 5 years. Algoma University has a unique history in that it is physically located in the buildings, and on the grounds, of the Shingwauk Residential School. As such it has been a place of education for many years but it is also the site of much historical trauma and loss.  Having benefited myself from attending a small university as a student the small size of Algoma really appealed to me. The opportunity to work with a community that I had grown to respect so much was incredibly engaging. So in 2010 I took up appointment here in Sault Ste. Marie, Ontario.

Six years later and it’s Canada Day once more. So I’m taking the opportunity to look back over my 13 years here in Canada and see how far I’ve come. Not only from the West Coast of the country, across the Rockies to Alberta and then through Manitoba and Saskatchewan to Ontario but in my understanding of Canadian Culture and heritage

So today it is with pride that I celebrate Canada Day, as a Canadian, while also respecting the fact that for many of my First Nations friends, colleagues and students today isn’t a day of celebration.

Having recognised that, I love the press release distributed by the Assembly of First Nations today. National Chief Perry Bellegarde drew upon the history of the First Nations contributions to this country, and all that live here, and then moved past the hurt and preponderance on past travesties to take us a step towards a united future with his closing statement: “This must be our goal.  A stronger, more just country for all of us will ensure that all the peoples of this land have reason to celebrate when we join together next year to mark Canada’s 150th birthday.”

Chief Bellegarde, I honour you, for recognizing that now is the time to move forwards together; that the time has come for us to unite.

In a week where the press has been inundated with the ramifications of the vote for England to leave the EU I am delighted to be able to say that I live in a country where diversity is recognized and appreciated.

Where our Prime Minister is committed to “…a country where everyone is equal”.

I will always be English, but today I’m also very proud to be Canadian.

Deafness is a continuum…. it’s not all or nothing.

As I’ve mentioned before, I’m deaf. I intentionally use the term ‘deaf’ rather than hearing impaired, hard of hearing or Deaf. I’ll explain why in a moment, but first let me explain what the difference is between the terms:

Deaf, with a capital ‘D’ refers to people who are born Deaf, or become so prelingual (before they can speak, usually this means before 12 months of age).

Nyle DiMarco is probably one of the most well known Deaf people  today following his winning both America’s Next Top Model Cycle 22 and Dancing With The Stars Season 22.

Hearing impaired, in contrast, is usually how the hearing community describe people with a hearing loss. As so we’re missing something, that we’ve lost it and that we’re not ‘normal’ as a result.

Hard of hearing is kind of in the middle. It describes the reality but doesn’t fully identify with either the Deaf or Hearing cultural perspectives on deafness.

The term ‘deaf’ is usually used by those of us who have accepted our deafness, but were late deafened (post lingual) and/or have a progressive loss.

It’s not to say that we don’t have any residual hearing but that we’ve accepted having little, to no, hearing.

Deaf, deaf, hard of hearing or hearing impaired – we may, or may not, choose to use devices such as hearing aids, cochlear implants (CI) or bone anchored hearing aids (BAHA). They also may be completely useless and not viable options for us too.

Some of us have progressive loss and some us have loss that literally can be different day by day/ moment by moment. I can wake up one morning with no hearing at all and that day, my hearing aids will make no difference whatsoever. Other days they make a big difference.

So why do I personally use the term ‘deaf’. I use it because I have accepted my deafness but also because it helps me. If I say I’m hearing impaired the onus is on me to communicate. When I say that I’m deaf most people take the time to ask me about the best way of communicating with me and make sure that I can see them. So I use the term deaf.

I have a progressive hearing loss. It was first identified when I was a toddler. If my mother called to me from behind me I wouldn’t answer. Once she worked out that I wasn’t just being disobedient it quickly became apparent that my hearing wasn’t quite right.

I spent my childhood in regular visits to audiology and Ear, Nose & Throat (ENT) specialists. I had grommets/tubes surgery on several occasions which is designed to equal up the pressure on either side of the eardrum; though usually they’d get me under the anaesthesia only to find that there wasn’t a fluid imbalance and they weren’t needed!

Unfortunately, I also broke my nose on a number of occasions which also required surgery. My mother has many ‘happy’ memories of sitting at my hospital bedside marking her students work, or writing their report cards, while I recovered from various surgeries.

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I was born and raised in England and so the school system is slightly different there in that you go up to Secondary School (High School) at the age of 11. My last year of junior school I’d struggled a great deal more than in the past so the summer before I went to secondary school I had my first hearing aid fitted; in my worse ear, which was my left.

I also had braces and glasses fitted and a baby sister born in the same week!

Anyway, I wore one hearing aid for the next few years and learned how to advocate for myself. I learned to make sure that I always had spare batteries, and the school office kindly kept spare batteries for me too. I learned to make sure that I was always sat in class so that I could see the teacher’s face and most of the students’ faces too.

Basically, I learned to ‘pass’.

My school, Townsend Church of England School, was partnered with Heathlands School for Deaf Children. While some of the deaf children came to Townsend to be integrated in mainstream classes, I went the other way. I was mainstreamed and attended Heathlands several times a week. Initially I went for work experience as I planned to be a junior school music teacher at that age.

However, once there the school recognised that I was having some issues and had me attend speech and language therapy as well.

Heathlands, to this day, promotes all forms of communication including spoken language as well as British Sign Language (Yes, BSL is very different to American Sign Language).

As a result, while I speak very softly, as I ‘hear’ my own voice inside my head as much louder than it is heard by others, I speak well and don’t have a typical ‘deaf’ accent.

However, I have never truly heard more than about 20-50% of what’s actually being said to me.

I guess!

I take the parts of the words that I hear, and I make up the rest, and I’m very accurate.

Once in a while I get in a mess. Usually because I’ve missed the context of a conversation and while the conversation itself made total sense to me, I was actually talking about a completely different subject to that of the person I was talking with.

I speech read. That means that I don’t just lip read but that I watch your whole body, your demeanor and mannerisms to give me clues as to what you’re saying.

Once again my test results are confusing for health professionals. I now have a severe hearing loss. However, I still score over 90% on word recognition.

The most likely reason for this is that I am a reader. I learned to read as a very young child. In fact, I was reading books before I started school at the age of 4. I remain an avid reader to this day.

As a result I have an extensive vocabulary and therefore have a huge lexicon of words to choose from when I’m trying to work out what is being said.

As I said before, I ‘pass’ in the hearing world. Or at least, I did.

In my early 20’s my hearing deteriorated further and I was prescribed a second hearing aid for my right ear. I refused to have two aids for several years. In my mind, one hearing aid meant that I had a hearing loss but two meant that I was deaf. It took me a while to culturally adjust to the concept and I didn’t really accept being ‘deaf’ until my hearing got a lot worse.

In 2014 I reached the stage of being ‘legally deaf’ in Canada. That means that I can no longer hear enough to ‘pass’ with just my hearing aids, but that I have to rely on other forms of communication as well. In my case, that means that I now have to be able to see people’s faces to ‘hear’ them and that a standard phone, always difficult, became impossible. It’s when I started needing a ‘hearing dog’.

Thankfully I heard about the Canadian Hearing Society and have been fortunate enough to work with some fantastic staff at my local office who have helped me identify resources that help me specifically.

So I’m now working my way through ASL classes (which by the way really hurts my hands!) so that I can communicate in an emergency situation or if I get to the point where my voice can no longer be understood by others.

They also helped me try out TTY (TeleTypeWriter) which works somewhat like text messaging over normal phone lines as long as both parties have TTY machines.

I also tried Relay services which is where I can type or speak my end of the conversation and an operator will type the responses back to me. I hate the lack of privacy in that service and also find that most of the time if I use it to call people, they hang up as they don’t listen long enough to the operator to realise that they’re not being asked to pay for the call!

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I rarely use it. It actually amplifies sound to the point that hearing people should really be wearing ear protection if the sound was continuous!

Thankfully, most of the time I don’t need to use a phone. The use of smart phones has become so prevalent in today’s society that I can text, or email, the majority of people that I interact with.

For businesses I can usually use secure, online services such as secure messaging or online chat facilities. Or, in many cases I just simply go and see them in person.

So for example,  if I need to make an appointment for my car to be serviced, I drop in to the garage and book it in. Yes, it takes a little more time out of my day; but it’s effective.

However, every now and then I will hit a big brick wall!

This is where I am required to use the telephone, and only the telephone is allowed, to accomplish something that I need to do.

Now to be fair, the organisations stating this requirement often do provide TTY facilities (known as TDD in the US) but I don’t have a TTY device.

If you recall I didn’t like it and I also found that many times it would take hours for me to get somebody to answer it. Also, as I can manage 99% of my life without such a device why would I invest in one?

Additionally, right now, my breathing is so difficult that I can’t speak clearly. As I speak softly at the best of times, I am not currently audible on the telephone so traditional relay isn’t an option for me; even if I was willing to deal with the third party in my conversation and could get the organisation to answer the call.

I am not yet fluent enough in ASL to use video relay services.

So I’m left with a conundrum.

I have to get something done but I’m being told that the only way that it can be done is by telephone, which I can’t use.

Now I could ask a friend to call for me. Bizarrely, given that the reason these organisations give for insisting on the telephone is that of security they don’t seem to have a problem with a ‘complete stranger’, from their perspective, acting on my behalf.

Yet I have two problems with this.

1. I’m 44 years old and I have been independent a very long time. Why should I have to have somebody else do something for me? It’s not convenient for me, or for them, and often I don’t really want to share my personal information with them.

Which doesn’t detract from the fact that I have some awesome friends but rather speaks to the fact that I just don’t feel that it’s appropriate.

2. More importantly, as far as I’m concerned though, is why should somebody else get to dictate to me what kind of device I use to help me with my disability?

Can you imagine being told that you have to use a specific make and model of wheelchair to go shopping because the mall doesn’t allow any other kind in their stores?

So what do I do? I advocate and educate. Repeatedly.

Today I had a win! Kind of.

As I’m still not doing so well I needed to reschedule a trip that I had planned for a couple of weeks time. While the entire booking had been made online and all the accompanying reservations, and requests for an accessible room, had been managed online, I could only reschedule the trip by phone!

Thankfully, on this occasion, with a bit of detective work I was able to find an email address for the right office in the organisation in question. So I emailed them and explained my situation.

The first response was probably automatically generated, or at best was a cut and paste response. Please call the following number to reschedule.

I replied, explaining once again. This time I got a human response. Initially they didn’t know how to help but would find out. This is when businesses keep or lose my business. They did find out and made arrangements with me to connect with them by live chat, and to connect to the manager specifically, so that they could help me. But here comes the kicker…. it was made very clear that this would be an exception!

Now I really do appreciate the fact that they did make an exception, that the lady that I worked this all out with today was fantastic and went out of her way to help me reschedule everything and make sure that all the disability accommodation requests were carried forward to my new booking.

However, why did this have to be an exception?

There are many people, not just deaf people, but those with speech difficulties or social anxieties about using the telephone, that would benefit from there being alternative communication methods to the telephone.

Which brings me back to my opening statement today. Deafness is a continuum. It’s not all or nothing.

Yes, there are people who are culturally Deaf. They are comfortable with relay services and usually fluent in sign language.

Yes, there are people with normal or near normal hearing where a little bit of thought and speaking a little louder will help them.

However, there is huge community in between these two points where our deafness is at different points.

We can hear some frequencies and not others.

Amplification helps some and not others.

Personally, I actually have something called ‘recruitment’ as a component of my deafness which means that I can’t tolerate loud noises either. They sound disproportionately loud to me and give me migraines. My hearing aids actually deliberately dampen loud noises!

So what works for me today, may not work for me tomorrow. A case in point is that right now my amplified phones are useless for me as I can’t talk well enough to be understood.

The Accessibility for Ontarians with Disabilities Act actually states that there are different kinds of deafness using the terms I described above. However, in their guide to help organisations comply with the Act there is an assumption that all communication is in person.

Which works fine, until it doesn’t.

The company that I was trying to sort things out with today is based in Florida, USA. My local gas company no longer has any offices in town.

I can’t physically go and see either of them in person.

To date, I have not yet had to deal with this conundrum and found any valid reason for why the telephone is being insisted upon.

I use secure online messaging with Immigration regarding my sponsorship of my mother’s residence in Canada.

I use secure banking for all my financial activities.

I can access my medical test results through an online secure website.

So if my most personal and intimate information can be handled using secure online services I am quite sure that rescheduling a trip, or arranging for a gas line to be installed, can be done using the same technology.

So come on people – it’s 2016! Lets use the technology that’s available to us and stop discriminating against the disabled.

Let’s get educated and understand that it’s not a case of hearing or Deaf –  there’s a whole continuum in between.

You don’t have a right to dictate to me what equipment I have to use, if any.

It’s my right to choose and that’s protected by the Canadian Charter of Rights and Freedoms.

I do my part. I see it as my responsibility to advocate for myself. I do speech read. I do work very hard to ‘hear’. I use my hearing aids despite the fact that they’re not like glasses. They don’t return my hearing to ‘normal’.

In fact hearing aids, CIs and BAHA’s have a couple of major problems that the hearing community don’t seem to understand:

They only work when we use them! As soon as we take them off; which we have to do to shower, swim, sleep or just give our ears and brains a rest – we’re still deaf.

They don’t make our hearing ‘normal’. They just give more feedback to our brains that we have to interpret. Our brains have to learn to understand and interpret what we ‘hear’. It takes me about 3 months, every time I get new hearing aids, to adjust and I wear mine most days from the moment I get dressed to the moment I go to bed.

For those people who use CI’s or BAHA’s it takes about 2 years!

So please understand that when I say, “I don’t use the telephone, please text or email me instead’, I’m not saying it to inconvenience you. I’m actually simply informing you that this is how I choose to communicate.

So if you’re somebody who has to communicate with people as part  of your job please don’t assume that everybody can either use the telephone or is Deaf. Please make sure that you have alternative forms of communication available.

To those people that I’ve come across who have gone out of their way personally to accommodate me – I thank you.

People have used their personal cell phones to text me; or email me. They have listened to the voicemail on my phone and actually sent me a text or emailed me instead or repeated their names and numbers several times, very clearly.

I thank you.

However, I also wish it wasn’t necessary.

We have the technology – let’s use it!

When did compassion, courtesy and general professionalism disappear?

So I spent most of today at the hospital getting more tests done, trying to find out why I’m having so many problems breathing.

As a result I was seen by a variety of different health professionals. They were all excellent at the practical components of their job but it quickly became apparent that some of them seem to have forgotten that there is a living, trying to breathe, human being at the centre of this.

I’m deaf. I need to see faces to be able to ‘hear’. I have some hearing with my hearing aids in, which I was wearing today. However, hearing is hard work for me. It takes a lot of effort especially in a busy hospital environment with lots of background noise.

My chart is clearly marked with a nice little bright blue sticker showing the international symbol for hearing impaired/deaf/Deaf. Unfortunately for me, because I have a progressive loss, and was mainstreamed through school, I speak very well (I don’t have the typical ‘deaf’ accent) and I “pass” in the hearing world as ‘normal’.

Due to the nature of the testing that I was having done today I had had to leave Kai at home, so people also didn’t have a visible reminder of my deafness in the form of a 50lb Standard Poodle wearing a vest that states “Deaf Handler”.

However, how hard is it to make sure that you face me when you’re talking to me?

It started with the triage nurse showing me where I needed to wait. She walked off in front of me, far too fast for me to keep up, talking about what was going to happen.

I literally couldn’t keep up and hadn’t a clue what she was saying other than the fact that I knew she was talking. I called out to her, as much as I could in my breathlessness, and she didn’t hear me.

Thankfully other patients did and they stopped her. She slowed down but then didn’t talk to me at all.

I’m not stupid. I’m deaf. I just need you to face me.

An hour or so later, and I’m waiting to be seen still and I start having an allergic reaction. Patients in the waiting room have fruit infused water and iced teas with lemon. These are major allergens for me. So I go up to the desk and ask if I can wait somewhere else. Again, the staff member talks to me while facing away and carrying on with something else. I have to ask her to repeat herself, facing me, several times. It’s a huge imposition apparently for her to take 30 seconds to actually face me!

If I was well, I’d have been angry and advocated for myself and educated her. If I was working, and her teacher, she’d have been given a failing grade and expected to retake my class.

However, today I was a patient and it just hurt.

I didn’t feel that I mattered enough for somebody to take a few extra seconds to face me when talking to me.

To be fair, she did find me somewhere else to wait – that was somewhat safer.

A porter comes to take me for more testing. By now my friend has arrived and is actively advocating for me. I am very blessed. She reminds the porter that I’m deaf and need to see faces to ‘hear’.

The porter comes round to the front of the wheelchair to face me and re-introduces herself and explains what’s happening. Not a trace of frustration with having to repeat herself. In fact, if anything, she was apologetic about not having faced me to begin with. I felt cared for and recognized. I existed! I was a real person! It didn’t take much…

The porter then ensured that she faced me whenever she spoke to me. Not only that but she specifically passed on this information to different staff as she transported me between different places. Everyone that she spoke to then made the effort to make sure that I could see their faces which, in some cases, was quite difficult for them due to the positions I was in for the tests.

She advocated for me, when I wasn’t in a place where I could do so effectively for myself.

The porter was a bright spot in my day. Simply because she took the time to make sure that I could see her face, and to facilitate my interactions with other people. She advocated for me.

In contrast, at one point a technician came to run a test on me and I don’t think in the 5-10 minutes that it took that she spoke more than 2 words to me. I can’t be sure, as not once did she actually face me. This was despite the fact that the test was pretty personal and invasive. I literally felt like a lump of meat being man-handled.

I understand that health professionals can’t treat everybody as so they’re a member of their own family. To be that empathetic would cause burn-out and make them poor at their job. However, when did compassion, courtesy and general professionalism disappear?

As part of my job, I often work in medical schools and teach classes on professionalism, ethics and interactions with patients and their families.

Today, I was reminded of how important those classes are. Health professionals need to have objectivity. They need to have arrogance for they literally hold our lives in their hands; and if they aren’t arrogant enough to believe in their abilities and skills then they could never be successful at what they do.

However, there has to be a balance between objectivity and empathy.

I believe that this balance is compassion. It’s being courteous to each other and professional.

It’s remembering that every patient is likely to be scared. To not be at their best. That they’re human. That they need to feel cared for and not like a piece of meat. That while they may cope well when they’re well, by definition if they’re a patient they’re sick and/or scared of being sick.

Sometimes compassion can be seen in the simple, practical things like taking note of the fact that I’m deaf and making sure that I can see you when you’re talking to me.

Sometimes, it’s in the intangible. The way that you deliver information or news. It might be repetitive and boring to you. However, to me this is new. This has implications for me. It makes a difference to my life.

My results today were mixed. They didn’t find the cause of my difficulty breathing but they did find a whole new health problem for me to deal with. This was presented to me very matter of factly and then I was sent home. No time to process the information. No time to ask questions. Just “We can’t find the cause of your breathing issues and by the way, you need to see a new specialist and they’ll be calling you tomorrow with an appointment.”

I’ve worked in health services research for over 20 years. I know that being called for an appointment the next day is not usually a good sign.

I get the fact that I’m complicated; that nothing much is making sense and that that’s frustrating to you – the health professional. You’re used to problem solving and finding solutions. I’m not helping.

What seemed to get forgotten today though was that I’m the one living this. I’m the one having problems breathing. I’m the one that has now had a specialist, my own doctor and a handful of health professionals literally say “We don’t know what’s wrong or how to deal with this” all in the space of 48 hours.

At this point, all they can recommend is to rest, stay isolated and wean off the steroids slowly so that hopefully we can find the problem once the steroids aren’t masking any issues.

That is scary. Steroids have been keeping me alive for the last 6 weeks. Every time I’ve weaned off them I have become worse and had to go back on them. This time we’re doing a much slower wean and hopefully that will help.

In the meantime I have a whole new health problem to research and find out about before tomorrow!

Hopefully, this new specialist will offer compassion, courtesy and professionalism because at this point I am so far passed tired that I simply can’t advocate for myself.

But, then again I shouldn’t have to.

So I made it to Tuesday…. despite Grey’s Anatomy!

Anybody who read my first blog will probably remember that I was waiting to see the specialist today, Tuesday, in the hope that he’d have a solution (or at least a reason) for my breathing problems.

The good news is that I did make it to Tuesday; the bad news is that he doesn’t know what the problem is either. Nothing is making much sense.

He recommended hospitalization in a negative pressure, private room to give my body a chance to rest. The thought terrified me.

Before this last anaphylactic reaction my most serious reactions were actually when I was in the hospital in 2011/2012. As a result, I know that despite their best efforts, it’s impossible for the staff to keep my allergens away from me. Citrus, especially, is so prevalent in everything these days. Berries (also an allergen) are abundant at his time of year.

We agreed that I might not have a choice much longer, but that he’d let me continue to isolate at home as long as I continue to do nothing.

I’ll stay on the higher dose of steroids and do a much longer taper and he’s ordered more tests. So I’m basically still in a holding pattern of not being able to breath properly but not knowing why.

The asthma component seems to be under control (though I was informed that what I had considered stable for the past 8 years really wasn’t and that we’d be addressing that in the future).

To get to the specialists office, which was all of 2 minutes away, I had to over use my Ventolin (TM) inhalers. Not that they seemed to do much, which makes sense if the asthma component is under control, but I’m not sure what else to do.

So I wait for the tests and cancel my life for the next couple of weeks.

Which brings me to Grey’s Anatomy….

When this all started I had to find something to do that involved as little movement as possible. When reading was too hard I turned to Netflix and at the recommendation of a friend, have been working my way through Grey’s Anatomy.

For anybody who hasn’t seen it, Grey’s Anatomy is a TV series that follows Meredith Grey as she progresses from being an Intern to a Resident to the Chief of General Surgery at a hospital in Seattle.

Like many TV shows it centres on several characters and their lives and relationships. Every episode seems to include at least one death, sex between a new combination of characters and the doctor’s remarkable ability to identify, diagnose, test for and resolve complex health issues using innovative surgery within 44 minutes!

Having worked in health care I am well aware of the used condoms that janitors clear up daily in the supply closets but I’d still like to reassure anybody else watching, that in my experience, health professionals do act a lot more professional than they do in this show. It’s entertainment.

Which brings me to my thought for today. Where is the boundary between entertainment and education? 

One of my medical conditions is Osteogenesis Imperfecta (OI). If you’ve heard of this at all you’ll know it as ‘brittle bone’ disease. One of the reasons that you may have heard of it is actually from Grey’s Anatomy.

Over a couple of episodes, in Season 11, one of the main characters finds out that her baby has OI and her and her husband decide to induce early and let the baby die a natural death, rather than carry to full term.

Now let me be clear, there are a number of different types of OI and the show did make it clear that the baby had type 2, the worst. The baby was experiencing fractures in the womb and even if carried to term, would be unlikely to live past 6 months, and that 6 months would be full of pain.

I have type 1 or type 3. The milder forms. This means that I experienced most of my fractures in puberty. That as I grew older I experienced less.

However, it also means that I live with an invisible disability that impacts almost every part of my body.

OI is a deficiency in collagen. Collagen is the building brick for the body.

So in my case, it means that I have:

Progressive hearing loss (also compounded by having Ménière’s Disease as well).

I am at a high risk of fracture and consequently have to be very careful with what I do and how I live. Several times a year I fracture the smaller bones in my body, mostly my feet, which I self-treat unless they’re displaced. Even then I’ll often put them back in place myself and just carry on with life, avoiding an ER visit.

The whites of my eyes (sclera) have a grey tint but not the shocking blue of type 2. Which brings with it an over sensitivity to light, and an inability for my eyes to adjust to changes in light as quickly as they should and consequently you’ll rarely see me outside without sunglasses.

My heart has to be monitored as I have a murmur as part of the OI.

I also have spinal curvature and severely brittle teeth which has meant hours and hours of dental treatment with pretty much all my teeth having had root canals. Several of which have had to be repeated and then treated surgically as well.

Just to confuse the doctors, who always think of OI as somebody with restricted height, I am of a normal height  which is typical in Type 1. In fact, I’m actually pretty tall at just under 6′- but my Dad is 6′ 6″.

Types 1 and 3 come with respiratory problems too; which might help explain my current difficulties.

So this is what the milder form of OI looks like for me.

Type 2, the one presented in Grey’s Anatomy is the most severe form. It is frequently lethal at, or shortly after, birth, often due to respiratory problems. There are numerous fractures and severe bone deformities. People with type 2 are usually very short and their lungs are usually underdeveloped. Their sclera will be a vivid blue in most cases.

Grey’s Anatomy were absolutely factually right in how they presented Type 2.

I, personally, appreciated the way that they handled the story line. The mother is presented as a Christian who could not bring herself to terminate the pregnancy. She was about 24 weeks at the time, and as a doctor herself, knew that babies could be born viable at that point.

However, when she realized that her baby was experiencing fractures, and therefore considerable pain, while still in the womb, she was placed in an impossible position.

The script writers came up with a very humane solution which was to induce the birth and let the baby die naturally.

So I don’t have an issue with the facts or how they dealt with this specific example. Where I’m more confused though is in trying to work out where the boundary is for such shows between education and entertainment.

They never mentioned the Osteogenesis Imperfecta Foundation who work tirelessly to educate and support research into this rare condition.

They didn’t mention the 25-50,000 people that live with OI (or all types) in North America.

They didn’t mention the community of people, impacted by OI, that meet annually for a national conference in the US.

They didn’t suggest that the parents meet with other parents with surviving children with OI.

Most importantly, to my mind is that they presented OI as a disease that all the health professionals knew about. This is simply not true.

OI is a foot note in most medical students’ learning. If anything, health professionals will remember seeing a picture of somebody with Type 2  OI as the vivid blue sclera is pretty distinctive and memorable.

Therefore, I am the expert in my condition. I’m the one that has to educate repeatedly. To remind health professionals that a suspect fracture often won’t show on a standard x-ray as my bones are too thin (osteopenia) and that it’s better to treat as if it’s fractured and do imaging a few days later to confirm, than to not stabilize the bone.

I’m the one having to remind them not to pull or push on my limbs, or bend them into awkward positions, even for x-rays.

I’m the one having to remind them to use caution when inserting IVs, taking blood pressure, or performing other medical procedures to avoid causing injury.

I’m the one that has to remind them that I have the experience of my own body and that I can give good directions for the safest ways to lift, carry or reposition me; especially after a fall. (In my teens I broke my knee because people wouldn’t listen to me and insisted on lifting me after a fall; so instead of just having a fractured wrist I now had a broken knee to deal with as well).

Having dealt with dozens of fractures and medical procedures, I have a good sense of when a bone is broken even before x-rays are taken. Just like with my nose a couple of weeks ago. I knew that it was fractured.

The nurse on admitting didn’t. Because I went immediately to ER I had hardly any swelling at the time and no bruising yet. You had to look straight on at me to see the bend. Thankfully on that occasion, the ER doctor did listen to me and treated me exactly as needed and very well.

However, none of this was covered in Grey’s Anatomy. In fact because they chose to present Type 2, without any information about the other types and all the points I list above, they reinforced all the myths about OI.

8-9 million people watch Grey’s Anatomy. Many of whom will be in the health care professions or are interested in becoming a health professional.

OI is a rare disease. What a fabulous opportunity to educate people about this disease that was missed for the sake of a story line.

I understand that in Season 12 the same characters get pregnant again and I’m sure that there will be lots of drama about whether this baby has OI or not too.

However, I’m also sure that, this being entertainment, this baby will be healthy.

So I have mixed feelings. I love the fact that they raised awareness of OI in general. However, I wish that they’d done a better job of educating about all the different types of OI and that there are people living with OI daily.

Would that have made for a better show though? I don’t know. So just where is the boundary between education and entertainment?

Right now though, I wish that I was a patient on Grey’s Anatomy and that all my health professionals would be as knowledgable about OI as they were on the show, that they could run all the tests needed (including the tests that I’m waiting on) and get the results instantly, find the source of my problem, fix it and let me return to my ‘normal’ life within 44 minutes!