Max’s journey

By Nicola @nickynoona

My story is about my son Max who is now 12 years old and has Asperger’s Syndrome.

Max was born a healthy 7lbs 10oz in the hot summer of 1999. From day one he was an easy baby. Always happy and placid and rarely cried or threw tantrums. I counted myself very lucky to have such a content child. Max was walking by 11 months old and was ahead of other children with his talking too. I was not worried about his development or behaviour in any way.

Coming up to Max’s second birthday I had been shopping for his party, which was arranged for the coming weekend and bumped into some good friends whilst shopping. Us girls started chatting, Max was sitting in his buggy and my friends daughter who was about 4 years old began talking to Max and took an interest in a small toy he was holding. She took the toy from him to have a better look, with this ensued an almighty scene. Max began to scream and thrash around in his buggy. My friends and I stood in shock, they asked me if he had ever behaved this way before and I assured them [...] continue the story

Planning an accessible wedding

By Carrie-Ann Fleming

Almost 2 years ago, in November 2009, my boyfriend Darren surprised me with a candlelit anniversary dinner, which ended in a romantic proposal. I was ecstatic, and friends and family were thrilled for us. After celebrations came the questions about when we would get married, and what we were planning… which was a daunting prospect! As a wheelchair user, I really didn’t know where to start with all the preparations, how exactly do you plan an accessible wedding?!

The first thing to decide on was the venue. We ruled out a church ceremony, as neither of us are religious, and for accessibility it would be good to have the whole day in one place. We did a lot of searching online for accessible local hotels, but struggled to find one which met our requirements, until a colleague recommended the Grange Hotel, at Grange over Sands.

The Grange Hotel was built in 1866 in an elegant Italianate style, yet still manages to be wonderfully accessible. All the function areas are accessible by lift and wheelchair ramp, and they have bedrooms specifically tailored for guests with limited mobility, which offer spacious wet rooms. After one visit, the decision was made! The hotel [...] continue the story

Matt’s marathon

Matthew King from Bedford, who is about to start his career as a lawyer, completed the New York marathon in 2007 in his chin controlled powered wheelchair, which he uses as a result of a spinal injury. Matt kindly shares his experience of travelling to New York and taking part in the marathon.

By Matthew King

My name is Matthew King, and in 2004 at the age of 17 I broke my neck playing in a game of rugby, and have been left paralysed from the neck down and dependent upon a ventilator to breathe at all times and use a chin controlled powered wheelchair for mobility. Following my accident I still wanted to lead as good a life as possible, and therefore decided to enter the 2007 New York Marathon.

Travelling to New York

The flight out to New York was relatively uneventful, if we choose to forget the fact that they dropped my wheelchair off the plane when trying to get it off! Not too much damage was done, and I was able to get back into it after a couple of minutes of minor adjustments (using a hammer that is!)

New York is an amazing, if not crazy place. If you think [...] continue the story

The lasting effects of a temporary disability

By Margo Milne

Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult?

When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again.

Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in her case at 14. After 2 weeks in a wheelchair, she recovered sufficiently to walk with a frame, and was back at school within 12 weeks.

Hardeep didn’t see himself as disabled and wasn’t aware of any discrimination. Lucy felt that, if anything, discrimination operated in her favour. She got lots of attention, long extensions on coursework deadlines, and was offered money by charities. People who had previously bullied her now protected her: “It seemed like in their minds; it was fine to bully me whilst I was ‘able bodied’ but whilst I was ‘disabled’ I was totally out of bounds, a person to [...] continue the story

In Sickness And In Health…

In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis.

He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who [...] continue the story

The Portrait: Simple Yet Complex, Obvious Yet Profound Part 1: The Eyes

By Judith Leitner

Over a century and a half ago, most folks were unable to create tangible visual links to their past. Many lacked the financial means necessary for creating pictorial inventories of themselves and their ancestors through the pricey art of Portrait Painting. Then, in 1839, Charles Daguerre in France and Henry Fox Talbot in England both announced that they had devised a way to ‘fix an image’, and the art and magic of Photography was born. With its affordable price tag, this clever novelty would enable everyman to express a primal, compelling need: to record, share and collect memories in pictures.

Cityscapes and still-life studies were the focus of the earliest photographic endeavors, as both subjects tended to be immobile during long exposures. Portrait photography evolved swiftly and concurrently, as technological advances in optics and chemistry allowed for less extensive exposures and richer images. Studios burst on the scene to accommodate the torrential parade of everyman and aristocrat alike. Since then, we’ve been voraciously crafting portraits and positioning ourselves in the ‘decisive moment’.

In spite of his deep ambivalence towards modernity and middle class values, the bohemian poet and art critic Charles Baudelaire allowed himself to be ‘mechanically reproduced’ by a [...] continue the story

How Did I Quit Smoking? I Just Stopped!

By Sean McDermott

I had quit smoking so many times that I decided not to use that word ever again and now when I hear people say that they have “quit”,  I take it lightly and reserve comment.  Quitting is something that you fear, something that you approach slowly and have a plan in place to overcome the odds, the mood swings, the cravings.  I had no such thing.

Let me give you some untypical background.  In July of 2007 I arrived at Toronto Western Hospital in an ambulance dying of Liver Disease from Alcoholism.  I know this because they told me next morning that I had been dying for about two weeks. I wouldn’t have made it through the night if my sister and Mother had not insisted as I lay in my sweat-drenched Queen bed, throwing up repeatedly, that I had to go to hospital.  Even then I kept thinking,  “if I could just rest” but I went as they say, kicking and screaming.  The Chief Physician the very next morning visited my bedside, told me that I was very lucky and that my life was about to change, that is if I wanted to live.  There is always the [...] continue the story

A Herd of Narcissists, Part 3

In Part 1 of this series, I wrote about the connection between shame and narcissism. In Part 2, I looked at narcissists’ belief that they are special and unique people. In this final section, I will be looking at their belief that they are better than others: the “others” in this case being you and I, the users of Canada’s healthcare system.

If you read Parts 1 and 2, you will know that I’m taking some of the basic tenets of narcissism and applying them to my experiences. I’m doing so because of the high level of frustration I felt trying to get reasonable care for my 77 year-old mother. I chose narcissism because anyone who has tried to negotiate with a narcissist–essentially a self-absorbed person–will understand the difficulties I’m describing. The self-absorbed are those who will only engage with others when it benefits them in some way.

The Canadian healthcare system, in some regions, offers several variations on this theme.

In general, I find that many healthcare workers have a lot of confidence and it comes from their basic understanding of supply and demand. Their scarcity gives them the upper-hand and they know it. Two predominant factors make up this issue: there [...] continue the story

A Herd of Narcissists, Part 2

In Part 1 of this series, I wrote about the relationship between narcissism and shame.  This brings me to my next point, which is that narcissists see themselves as “unique and special people.”

(Scroll down to get the rest of article.)

I’m looking at narcissism because I believe its submerged half, shame, is a shadowy but potent presence in many healthcare settings: its destructive force is shaping the behaviour of many working in the field.

I want to understand what went wrong with my mother’s journey through the healthcare system. I want to know why workers in it were so prone to lying, prevaricating and stonewalling. I would also like to know why advocating for my mother provoked so much anger and resentment.

I’m looking for answers because I am getting older and what I saw frightened me.

My mother’s journey started in an acute-care hospital. From there she went to a rehabilitation hospital, and from there she came to my home, where she lived for 20 months. She is now in a long-term care facility here in Montreal and is, for the most part, doing well. However, if you read Part 1 of this article, you will already know this wasn’t always the case.

Like many [...] continue the story

A Herd of Narcissists, Part 1

I’ve touched on the issue of shame twice now in recent articles. It’s because I believe it is a powerful tool for both good and evil.

When I refer to shame as a tool I mean that the evocation of it, whether self-generated or externally prompted, often triggers one of two responses: a self-correcting mechanism (I won’t do that again) or a self-corrosive mechanism (I’m no good). Brené Brown differentiates between guilt and shame by saying that guilt is attached to our actions while shame is attached to our identity. It’s the difference between doing wrong (Ooops) and being wrong (I’m such an idiot).

I sometimes experience a helpful form of shame when I drive carelessly, and my desire to avoid that feeling is probably what keeps me from doing it too often. On the other hand, being unfairly targeted or thrown into a bewildering conflict seems to evoke a different kind of shame. I’m talking about those times when I’m being treated as the source of a problem instead of just part of it.

Here’s an example: Driving to work one morning, I inadvertently swerved into a neighbouring lane on a one-way street. I corrected myself immediately, but another driver, who was behind me and in that lane, [...] continue the story