Let's Talk Language

For today's blog, let us talk the language of disability. An article was passed around my Facebook last week which talked about some of the problematic elements of using person first language. This got me thinking about my own linguistic journey with regards to speaking about disability and I thought I would offer just a few short thoughts about why I use the words that I do.

There are primarily two schools of thought when it comes to the language of disability. There is person-first language (person with a disability) and there is identity-first language (disabled person). For many of us in the community, which of these options we use is a personal choice and I believe that everyone should have the right to refer to themselves as they wish, provided it is not offensive. So…where did I start and where am I now?

To be perfectly honest, I don't remember the first time that I considered the language of disability. I know that in high school I had the nickname "crippled" among my closest friends (and yes, I realize that that in itself is problematic) but I guess it wasn't until University that I really put some thought into how to address this issue. Back then, I was all about person-first language. I think this is predominantly because that is the form that is used in academic discussions around disability. It wasn't until much later – the summer before graduate studies in England – that I truly stopped to unpack this language and figure out what it meant to me.

It was then that I realized that I was an identity-first kind of guy. I refer to myself as a disabled man and I take great pride in the label. There are two key factors that went into this realization. The first is that "person with a disability", to me, suggests that there is something wrong with me. Disabled person, on the other hand, suggests that I am disabled by the various elements of society. This is, in a nutshell, the social model of disability. I will say that I have some issues with a purely social model approach but in terms of language I feel that it is much more in line with my identity-first way of thinking.

The second factor is that I have enormous pride in my identity. My disability is a huge part of who I am and I have no reason to separate it linguistically from the rest of me. I am indeed "disabled" and I personally think that is great. I think deep down I have always felt slightly uncomfortable with person-first language because it creates a distance between the individual and their identity. That distance is not something that I see as advantageous and therefore it is not something I attribute to myself in any way. I think the domination of person-first language in our society reflects the fact that taking pride in being disabled is still challenging concept for many to wrap their heads around.

So there you have it, an albeit brief account of my take on the language of disability. As I said off the top, there is no right or wrong answer to this and I encourage people to use whatever they feel most comfortable with. However, I would also encourage people to constantly evaluate this choice. I have and am a better person for it.

Lessons from Andre the Giant

For today's blog, I begin with a simple statement. We should all try and be more like Andre the Giant. I recognize this is a strange way to begin any blog, but once I explain myself I hope to find some disability positive underpinnings to this aspiration.

Andre the Giant, for those who don't know, was the professional wrestler and actor who was affected by a rare form of gigantism that caused him to stand at an impressive 7’4 and weigh 540 pounds. Recently, I read Carey Elwes’ memoir of making “The Princess Bride”, the film for which Andre was best known. The memoir spends a lot of time talking about the man that they called the gentle giant, much of it hilarious and much of it incredibly poignant with regards to disability. They talk about a man who children would either be terrified of our run right up to. They talk about a man who, unlike his costars, could never blend into a crowd. And they talk about a man who, despite his physical differences (and the pain that accompanied them), was always happy and smiling and never judged anyone for their reaction to him. This got me thinking about being disability positive and how we should all take a lesson from how Andre, or Fezik to any Princess Bride fans out there, carried himself in his daily life.

Growing up with a significant physical disability myself, I have often been subjected to stares and to people being hesitant to approach me. As I see it, there are two basic ways to handle this hesitancy. The first is to be assertive in trying to educate others as to why they don't have to be cautious around me or my disability. The second is to just be positive, friendly and welcoming and let those remain cautious figure it out for themselves. There are definitely cases where the first approach is needed, where education would be hugely beneficial. But in thinking about the way that Andre the Giant handled both celebrity and hesitancy, I prefer the positive and welcoming angle to promoting acceptance of disability.

A couple of times in Elwes’ memoir, he quotes Andre the giant as saying things like (and I'm paraphrasing here) “Its okay that people react like that, I know that I am frightening". Here was a man stood out more physically than most of us with a disability do and who on a daily basis would have people running from him or staring at him. And yet, he was happy with who he was and, on some level, celebrated what his body gave him such as a long and successful wrestling career. He could have remained sheltered or been ashamed of who he was, but he didn't. He could have let the stares and the awkward encounters get to him, but he didn’t. Instead, he embraced his difference as an asset and found an incredible personal strength from it. That, in a nutshell, is what I think disability positive is all about.

So, Andre, although you may have died in 1993, I am still learning from you and your attitudes today. Thank you!

Thoughts on Para Pan Am

For today's blog, I was planning to continue my series on the aspects of my disability that has translated themselves into business assets. However, I have decided instead to offer some thoughts on the Para Pan Am Games which got underway last Friday in Toronto. I had the opportunity and the pleasure to attend the opening ceremonies and that got me thinking about the way to disability and success is perceived by society.

Let me start off by saying that I found the event enjoyable first and foremost. The parade of athletes from the 28 participating nations was fun to witness up close and the lighting of the flame was also a treat to be there for. However, I found the lack of disability presence in the show itself to be highly disappointing.  The stage was not wheelchair accessible. The masters of ceremonies were not visibly disabled and did not identify as people with disabilities. Of the dozens of performers and dancers who participated in the show, only a few of them appeared on the surface to have disabilities. To be fair, there may have been some among the cast who were non-visibly disabled and chose not to disclose, but it could not have been that many. Given that there are a number of disabled dance troupes, comedians and other performers I fail to see why the Para Pan Am Games chose to kick off a marquee celebration of disability and difference by reinforcing the able-bodied status quo.

I also feel it necessary to offer some thoughts on the language of disability that was used throughout the event. Let me first say that I absolutely support all athletes and I recognize how much of a tough road it is to compete at the highest level. That being said, I found a lot of the language extremely troubling. It seemed as though these athletes were not being celebrated for their athletic ability. They were instead being celebrated for overcoming their disability. Words such as "overcoming" and "exceeding" were peppered throughout the two-hour spectacle. The final portion of the torch relay was preceded by a video narrative of two athletes who beat the odds, overcame physical challenges and reached sporting pinnacles.

I find this approach highly problematic because it reinforces the notion that having a disability is a personal tragedy and that we need to embrace something normal (like sport) in order to rise above the disability. Why can we not celebrate these athletes as just awesome athletes? Why can we not talk about the disability as being an asset to them rather than as an aspect of their life that they need to rise above? There are still so many people in this world who view disability as one of life's ultimate tragedies and I believe that the language used at the opening ceremonies on Friday night is a huge contributor to that stigma. It makes it sound as though unless we can push past the disability to achieve sporting greatness, life with physical or cognitive differences is not really worth it.

I, for one, will never win a Para Pan Am or Paralympic medal and I am perfectly happy with my disability. In fact, I wouldn't have it any other way!

Memorability

For my blog today I'm going to continue to focus on the elements of my disability that make me into a better businessperson and entrepreneur. My venture is all about helping others identify the asset in disability and this series of blogs is meant as a supplement to the presentations and programs that I offer. Last week I discussed my limited hand function. This week, it is my ability to stick in other people's heads.

In a previous blog post I discussed the fact that my disability makes me memorable in my community. It is time to expand on that with a bit of a business twist. How does being memorable make me, or indeed any of us, more successful? The answer is quite simple. People relate to things they remember. If someone has an utterly forgettable experience they are unlikely to connect or relate to it. Like it or not my disability gives me a memorable quality and that in turn leads to more connections. I am different and that difference keeps me in people's heads.

Many times in my career as a speaker, I have had people approach me months afterwards and tell me that they remember what I said or that my message really inspired them. I am confident that this would not happen as often is my disability did not exist. There are many amazing speakers in this world but there are far fewer amazing speakers who bare my physical characteristics. I am confident that my unique look, and accompanying mobility device and service dog, keeps me in the hands of my audience for longer. This is a huge business advantage in a crowded market for motivational speakers.

The same holds true with regards to entrepreneurship. In a space where everyone is trying to find that one thing that sets them and their business apart, I was born with a mechanism that does that for me.  This means that business contacts are easier to build and maintain. It means that my message lingers in people’s minds and that they associate my message with something or somebody memorable. I read a book recently by sociologist Malcolm Gladwell where he talks about the stickiness of an idea; defined as the ability for an idea to ingrain itself in people's consciousness. I truly believe that my ideas are stickier because of my disability and that is a huge advantage for me.

To make this a more universal lesson, the take away of this blog is as follows. For many of us born with a difference, we are often told that we need to overcome challenges or fit in. However, I am confident that my difference makes me memorable and that is never a bad thing in business. Highlighting difference, therefore, will lead to more success.

Do you want to hear more about what a disability positive approach can do for you or your organization? Get in touch with us and let us show you incredible results!

Giving a Hand

For my blog today, I have decided to focus on one of the assets that my disability has given to me. I talk a lot about being disability positive, and in turn about some of the advantages that my disability has afforded me in my life and career. For the next several blogs, I want to talk about some of the different advantages that living with cerebral palsy has granted me. The first asset, or rather assets, is my hands.

My hands work differently than most peoples’. I have very little use, if any, in my right hand (depends what kind of mood it is in) and only limited use of my left. To define limited, I have the use of thumb and forefinger and reasonable gripping strength. That is it in the hand department. I struggled for a long time with things like holding utensils, can only lift fairly light objects and am a lifelong two finger typist. On the surface, this may sound like a huge disadvantage in my education and subsequent career. The limited usage in my hands has certainly given rise to its fair share of frustrating moments. However, I actually believe that it has made me a more successful student, employee and entrepreneur.

Firstly, I have a very good memory because I am rarely in a position to write something down quickly. Much like a visually impaired person can develop audio acuity, my brain trained itself in elementary school to remember a lot of information. This has also meant that I am particularly good at mental math. Because I cannot scribble down equations, I learned to do them really fast in my head. So, whether it is my ability to quickly calculate a tip on a business lunch or my mental capacity for retrieving a fact out of the memory banks, my inability to write things down has leveraged itself into a number of practical business advantages.

Secondly, my typing speed has meant that I am constantly looking to be concise, quick and to the point. That is not to say that I cannot occasionally be long-winded, but I have definitely had to learn to self-edit so that I do not get bogged down in work tasks. I may not be the fastest typist, but the strategies that come from needing to find verbal shortcuts have prepared me well for the fast-paced world of entrepreneurship. I cannot afford, sometimes, to be as flowery in my language as my artistic side would like and therefore have had to be nice and economical with my words.

Lastly, my hands are often icebreakers. That may sound like a bit of strange sentence, but it is true. The help that I require due to limited hand function frequently leads to the forging of great social connections. Several of my business cards have been given out to people who are assisting me thanks to my hands not doing the things that hands should do. It is a great way to meet people and a great way to begin or strengthen a relationship. These moments can be awkward, but I choose not to see them that way. They are opportunities for positive interaction. In the business world where positive interaction is the name of the game, my differently working hands are among my best assets.

So there it is in a nutshell, a pair of hands that some may see as a progress inhibitor I see as a progress accelerator. And that, really, is what my business is all about.

The 5 WHYs

This week, I am going to be asking a deceptively simple question. Why? And no, I'm not being purely philosophical. In fact, I am attempting to be entirely business minded. Allow me to explain. As part of the Social Entrepreneur Fellowship that I am currently enrolled in, we are working on developing business plans. As part of this exercise, we had to identify five of our key passions and ambitions. For each of these, we then had to go through a process known as the five whys. This is a process whereby you attempt to boil things down by repeatedly asking yourself why it is important. In completing this exercise, I was struck by how challenging and yet useful it was that I decided to put some of my thoughts down in this week's blog..

We will take, for the purposes of this blog, what I identified as my number one passion and ambition - helping others to change the way that they think about disability. So with that as our jumping off point, we then can embark upon the journey of 5 whys. Why is that my passion? The answer, when I stop and think about it, is quite straightforward. It is because I believe that a disability is something to be embraced and celebrated.

But why do I believe that? I suppose it is because disability brought so many positive aspects and experiences to my life and to the life of those around me. If you have ever seen me in a public speaking setting, you have no doubt heard about the many ways that I feel disability has positively contributed to my relationship. All of these positives are things that I truly believe that exist and therefore have made my disability, on balance, more positive than negative.

But why are those positives good things? In other words, what is it about them that is positive? This one made me hesitate for a while, but I think I have nailed down exactly why I see them in this way. All of these positives have two things in common. They have underlying themes of creativity and innovation. These, to me, are two of the most valuable characteristics that any human can possess.

Here comes why number four. Why does disability lead to creativity and innovation? As someone who has lived with my disability since birth, I wonder whether this is in fact the case or whether I am just a creative and innovative person. Fundamentally however I believe that my disability is, in part, responsible for that creativity because I have had to adapt so many times and in so many different situations. I am a firm believer that disability causes you to perceive the world differently and to think outside the box more often. So the answer to that why seems to lie rooted in my constant need to adapt.

And finally, why does disability lead to a constant need to adapt? There are so many angles or answers that could be taken this one but the core of it seems to me that society is not set up for people with disabilities. Some may disagree with this statement but the multiple barriers, both physical and social, that continue to exist in 2015 seem to suggest that it is the case.

And so we reached the end of the 5 whys. I appreciate the journey that they led me on and I appreciate the fact that they forced me to really boil down exactly why I was doing what I am doing my business. Did they answer everything? Absolutely not. They did, however, provide a level of clarity and reflection that I had not experienced yet. So I guess what I'm saying is that when you are faced with a hard decision for a tough choice, as a starting point, ask yourself why and then follow that up with four more whys. You may be surprised by the results!

A Good Read...

For today's blog, Disability Positive Consulting is going all literary with a book review. The book in question is an autobiography by British comedian and actress Francesca Martinez, who happens to have cerebral palsy.  The book, entitled "What the F*** is Normal?" was strongly recommended to me by my wife. After weeks of not finding the time, I finally hunkered down with the audiobook and listened in.  I can confidently say that Ms. Martinez's book is the most disability positive piece of literature that I have ever had the pleasure of reading.

As an autobiography, it is pretty standard. It documents her life from zero to thirty something; her successes, her struggles and the wide array of people who have influenced her life. There are three things, however, that make this such an entertaining read. The first is that the author herself reads the audiobook. This in itself is not all that unremarkable, particularly in the world of autobiographical audiobooks. There is, however, something incredibly refreshing about a woman with a mild to moderate speech difference reciting the hilarious chapters and stories.. To me, the minor slurs and spastic vocal patterns added to the charm of the read.

The second aspect of it that really spoke to me in a big way was the blunt and often hilarious honesty with which Ms. Martinez spoke about disability. Frequently in media and literature, disability is glazed over or otherwise over-inspirationalized in order to not make the audience squirm uncomfortably. But the chapters in which she discusses coming to terms with her wobbly self (as she articulates it) are real and relatable. My level of cerebral palsy may be far different from hers, but I felt connected to many of her stories. Of course it doesn't hurt that I am a fan of biting British wit, but even if I wasn't, I would appreciate Ms. Martinez's straight up, no BS exploration of the disabled identity.

The final reason that I cannot stop thinking about this book is simple. It speaks to exactly why I started my business. It speaks to disability as an asset in her life. Yes, she has struggles and frustrations but she also takes great advantages from her life because of her physical difference. She got her big break into television, a British teen high school drama called “Grange Hill” because they were looking for someone to add a disability diversity angle to the cast. In later life, her disability informed much of her comedy and gave her a unique perspective whilst breaking into the business. She talks at length about coming to terms with this process and about finally being able to take pride in her identity. She articulates, punctuated by perfect comedic timing and tongue-in-cheek remarks, many of the core values that I hold in my business. During the course of listening to this book, I was not only given a renewed sense of purpose in my business but felt somewhat validated by the narratives that Ms. Martinez built.

So if you like hilarious British comedy, read this book or listen to the audio. If you believe in celebrating disability and difference, do the same. If you want is truly disability positive experience, I cannot recommend this one strongly enough!

  

The Power of a Story

For today's blog, I'm going to talk a little bit about the importance of storytelling in disability. This, to some of you, might sound a bit strange and you may be wondering what exactly I've been smoking in recent days. The fact is, however, that I truly believe that storytelling is an important part of living with a disability. Allow me to elaborate…

Every person in this world has a story to tell. Every one of those stories is unique and each one interacts with a different set of characters, places and events. Growing up, I would often lose myself in the world of fantasy stories such as those written by J.R.R. Tolkien, JK Rowling and others. I loved these stories, and still do, for their ability to expand my imagination and awake my creativity. For many years, I was certain I was going to become a professional writer and write the next great fantasy epic. Needless to say, that never happened but I have always maintained a profound appreciation for a good story and a belief in the power of a compelling narrative.

When you grow up with a disability, your story is always just a little bit different. It has different characters, different events, and certainly many different places that other stories may not include. The first reaction of many people when they encounter the narrative of disability is to shy away from it, and to hastily try and find another book…any other book. Just as frequently, those of us who are in the middle of disability stories may try to change the words of our own pages. I certainly don't blame anyone for trying to do this, as it is what societies conditioned bus to believe we should do. But I think we need to look at narratives, especially disability narratives, as important tools for learning and understanding. Instead of shying away from reading these books, we should encourage people who have never encountered a disability narrative to interact and read it. We would all be much better for it if everyone in this world had some exposure to disability.

You may be wondering what I mean, and what exactly are you talking about in terms of letting people into your story. I think we can all agree that by virtue of being human we all project some sort of narrative to the world in the way that we act, the way that we think in the way that we move. I attend a monthly storytelling event where I am constantly impressed by the vulnerability and empowerment shown by the storytellers. Every time I attend one of these events, I am struck by how impacted I feel at the end of the night and how this story can connect to you like a few other things can. The same holds true for disability. When those vulnerable and empowering stories get told, and when we let people connect with the stories that are created by disability, we are removing stigma changing dominant perception that surrounds physical difference.

I love a good story, always have and always well, especially one that includes disability in its pages.

What It Takes

My blog today is an attempt to tap into my entrepreneurial spirit. To start off, let me paint the picture. I have recently begun a six month course at the School for Social Entrepreneurs, a collaborative and amazing program run through Toronto’s Centre for Social Innovation. My first day in class was this past Tuesday, and it was exactly the high energy, challenging you to think critically, ideas bouncing around kind of space that I was hoping for. In the first afternoon of class, our facilitator Mike Brcic (a successful entrepreneur and former dean of the school) said that, in his view, not everyone is cut out to be entrepreneur. He said that what you need is a work ethic, creativity and an intense drive. So that got me thinking…do I have what it takes?

Being as objective and self-reflective as possible, I think I am a creative person. I have been a writer of fiction since age 9 and my vivid imagination sustained me through childhood; constructing worlds, characters and the like. In addition, my disability has caused me to be creative in the way I look at the world. Some stuff I can’t do, so I find new ways to do it. With that in mind, I feel pretty confident in giving myself a checkmark in creativity.

Work ethic, to be fair, gives me pause to think. I know I have it, and I know when I am ‘on my game’ I can get things done. However, I also know that I have often struggled in my past with procrastination. I do have a tendency, it seems, to let things pile up on me. I have certainly got better over the years and have developed strategies to mitigate damages. Every once in a while, though, it rears its ugly head and my brain sends me into a holding pattern. Do I have the work ethic to pull this off? Sometimes I wonder.

So that’s one checkmark, and one question mark. That leaves me with drive to tip the scales in either direction. And when I think about it, all I’ve ever had is drive to change minds. Everything I’ve ever done comes from a deep rooted desire to break moulds and break stereotypes. In essence, in my view, that is the drive that an entrepreneur needs. There are easier ways to make many, but not change the world. So yeah, I think I’ve got it.

And here’s my ultimate clincher. For years, I struggled to find that career; that path that I want to follow to the top. And since making the commitment to myself, my family and the rest of the world to become an entrepreneur, I feel more alive than ever before. I have a level of focus that my previous attempts at a career had lacked. I will still struggle occasionally with procrastination, I may not achieve a stable income for a while, but I know somewhere deep down that I am a success.

And so I say this with confidence. My name is Tim Rose and I am an entrepreneur.   

The Power of Presence

For my blog today, I will celebrate father’s day by discussing something that my father recently told me. For a bit of context, I was doing a speaking engagement on the power of disability, which he happened to be at. When I asked him afterwards what he thought of what I said, he pointed out something that I did not include…probably because I did not have the benefit of the external perspective that he and Mum had enjoyed as I grew up. He told me that every year, every teacher whose class I was in would tell my parents how much my disability had changed the ‘feel’ of the class for the better. The same held true, he said, for every Cub Scout pack, community group or after school activity;  it was mentioned every time.

That got me thinking about this idea of the presence of disability and how it can change an entire group. As I’ve grown up, I’ve had more than one friend say to me “I’ve never thought about accessibility until we started hanging out” or something similar. When my family moved to the Middle East and the British secondary school that I attended was forced to put ramps in, the entire student body benefited. In other words, the very fact that me and my disability has been there has changed minds and made a positive impact.

It was never me and my personality that made the real difference, at least I don’t think so. I was just another kid; outgoing but sometimes too smart for my own good. But it was my physical difference that seemed, according to my Dad, spread positive ripples throughout every class or other group. The dynamic was made that much richer for not only my peers but my teachers as well. What this shows us that when difference is embraced, even if only through acceptance of its presence, things can change.

Ultimately, I do not think this should be surprising. And yet, we spend so much time trying to make differences ‘fit in’ that we ignore the amazing and widespread positive impact that disability can have. I never went into a new school year intending to change perspectives, my disability did it for me. It was never a conscious choice on my part or the part of my teachers, but instead a natural and sometimes subtle shift in the culture of the space. And that, in my view, is the ultimate power of being disability positive. Thanks for reminding me, Dad!

A Sense of Community

Today’s blog centers upon the idea of community. More specifically, how my disability has contributed positively to my relationship with my community and my sense of belonging within it. This is something that my wife Natalie and I often talk about in our presentations on the positive side of disability, and I thought it deserved a turn on the blog.

The fact is that the incredibly visible nature of my disability makes me memorable to others. Now some cynics may say that this is not a good thing and that society should, in this day and age, look past my physical difference. No-one likes to be gawked at after all. But I have a different take on the fact that I am more easily remembered; I think it is a huge asset. The fact that ‘the guy in the wheelchair with the big black service dog’ is known in my neighbourhood and beyond has led to some great community connections. People know me when I come into their stores, people recognize and say hi on the streets and I very much feel ingrained in my community, thanks in large part to my disability.

I have seen this phenomenon so many times in my life. As a teen expat living in the Middle East, the disability was the ultimate icebreaker. In university, my disability made me known and afforded me a cool sense of belonging. Now as an adult, I see it more than ever. Whether it is our favourite restaurants, the butcher or just friendly neighbours, my disability makes me memorable. Indeed, my wife who has grown up in the same neighbourhood her whole life tells me that she has built more community connections in my four years than in the twenty plus years previously. There is something very powerful about that.

What’s that old adage in sales? Being memorable is the best sales technique (or something like that)? What I am learning since founding Disability Positive Consulting is that my success as an entrepreneur is very much connected to the memorable quality that I am afforded by my disability. The basic premise of my business is that disability, and the lessons taught to me by my disability, are an asset in life and business. Nowhere is that more true than in my ability to build community wherever I go. Yeah, I am indeed ‘the guy in the wheelchair with the big black service dog’ and that has gotten me some pretty cool stuff in life.

Redefining Education

Today’s blog is another in my developing series on disability positivity in education. This has certainly been the most frequent topic thus far for this blog, with four of my posts falling under this umbrella. Reflecting on this, I think there is a pretty clear reason for this. Disability positivity, as a movement at least, is still pretty new and in development. As a result of this, it is the next generation that we need to focus on. And, as education is largely about preparing the next gen activists for what lies ahead, the education bend to my blog is not that surprising.

For the past year, I have been running a Disability Positivity pilot program at Monarch Park Collegiate, a high school in Toronto’s east end. I have not been paid for my time (except for a shower of compliments and a huge boost in confidence) and I have put a lot of work into my time there. Many have questioned this choice, as it has been a huge commitment to make for no income. But I am beyond glad that I stuck to my guns and followed through. I needed to prove what I knew to be true in my heart. Education needs a Disability Positive approach.

I am pleased to say that I did prove that hypothesis…and then some. My year at Monarch Park has been more successful than anticipated. The students are more confident, stronger advocates and take greater pride in their identity as disabled. I have counseled, trained staff and offered the community the much needed lived experience of disability. Together, we have pushed boundaries and I have been told by the principal, department head and associated staff that my presence there has been profound. So yeah, I’m pretty sure that I have proven the model.

Let me try and articulate the shift. Using a disability positive approach, we have empowered. Students are now no longer looking for ways to get around their disability, they are embracing it as a unique part of their identity. They are no longer shying away from advocacy, they are taking charge and speaking up. My Monarch Park crew has shown just how valuable a fresh take can be. For years we said to disabled students “You can be whatever you want to be, but we’ll try and normalize you first”. We have demonstrated that there is a better, more successful way.

I have told the amazing people at Monarch Park that I cannot continue there next year pro-bono. I need to focus on things through my business that will generate income, but I KNOW this can and should be one of them. And with a shout out to Julia Oliver, Monarch’s first winner of the Tim Rose Disability Positivity Award, I’ll say this: If what I’ve written here speaks to you and you too would love to see this happen, spread the word and get in touch. The movement is building, but I need your help. Together, we can bring disability positivity to education…in a big way.

Cleveland Reflections

This week, I had the opportunity to bring the Disability Positive message south of the border with a speaking engagement in Cleveland, and it was a huge success. Although it was only four days, it was a trip that stirred up a few thoughts in me that I feel are ideal for a blog as I get caught up with life around me. Let’s call these thoughts the Cleveland Reflections…

The first is physical access and the strength of the Americans with Disabilities Act. In one of my early blogs, I put out my position that Canada needs and deserves a federally backed National Disability Act. After spending four days surrounded by the ADA, I believe that now even more than I did. No, it’s not perfect, but it is far superior to anything we have here. All restaurants but one were accessible, not a single person balked at my service dog and the accessible hotel room actually had enough space to COMFORTABLY fit my wheelchair and accompaniments. All of these things are not unheard of in Canada, but they are certainly more rare. I chalk that up to disability being a part of the national consciousness since the days of George Bush senior. It has had time to evolve and that evolution has led to success.

My second thought is that in 2015, we really should be far better equipped for plane travel in wheelchairs. I mean the amount of bureaucracy, confusion and hesitancy that accompanies me getting on a plane is reminiscent of the comedy classic Airplane! No one quite knows what’s going on, the chair draws more quizzical looks than a live reptile and there is a lot of blank “Huh?” looks. Surely, in today’s day and age, we can do better. Whether it’s training or a culture shift in the airline industry I’m not sure, but something is needed. Think about it; they can break the sound barrier but get stumped by a mobility device? Hmmm…

My final thought is the most exciting one. It was reaffirmed to me in Cleveland that Disability Positive ideas are both revolutionary and desired. My wife and I spoke to a room of around 200 medical professionals, and they were engaged from the first word. I could tell that our ideas resonated in a big way. Afterwards, several people came up to us and told us that we had opened their eyes to a new way of thinking about disability. That is, in short, exactly why I do what I do. There is a new way to view disability and difference, and people love it when they hear it. The farther we broadcast the message, the more society can change, and that is an incredibly powerful idea.

So Cleveland was a huge success on many levels. A big thank you goes out to the team at MetroHealth Hospital for giving us the opportunity to share our story. It showed me that Canada is lagging behind in accessibility, made me wonder about Disability Positive approach to airlines and – most importantly – changed some minds. Cheers for that, Cleveland!

Sex Ed Round 2

For my blog this week, I have decided to revisit a topic that my blog has already explored – Ontario’s new (and apparently controversial) Sex Ed Curriculum. I am coming back to it because of the media storm that has surrounded it in recent times and because, quite frankly, I can’t hold my tongue any longer. These words have been bubbling under my skin for days, and it is time to put them down somewhere. Now given that this blog is focused on a Disability Positive lens, I feel inclined to underpin what follows with disability.

Here’s the cruz of the issue for me. The point of education to prepare our youth for life ahead…right? Unless I’ve been seriously misunderstanding education for thirty years, that is why we teach math, science, Shakespeare etc. If we don’t want to prepare our youth for the adult world, then we should close every school and instead just have giant grazing fields. Am I being silly? Yes, but I feel as though I’ve earned it after listening to similar silliness. Because guess what? Sexuality is a part of being human, just like numbers, words and laws. Whatever your perceptions of sex ed, to deny that sexuality is a necessary part of who we are is to deny our existence as a species. I don’t know about you, but that sounds way sillier than my grazing pen idea.

So let’s talk disability. The fact is that disabled people are sexual beings. Many of us have the same, if not stronger, sexual urges than our peers. The second fact is that disabled people are often not afforded the same opportunities as their peers to explore the sexuality. And I will add in a third fact; sex ed is sorely needed in the disabled community. Some may argue that this is an opinion rather than a fact, but when you see what I have in the community, you would take it as fact as well. If we continue to attack the need for sex ed as a province, then disabled people will be among the most vulnerable. We cannot let this happen.

Teaching children and teens, especially those of us fortunate enough to have disabilities, about safe and consensual expressions of sexuality is critical. In my view, it is more critical than any algebra equation, account of WW1 or Shakespearean verse that we make part of schools. The fact that so many people cannot see this and chose instead to deny their children that opportunity is beyond worrying. Please, do not harm the next generation. Be disability positive. Be sex positive. Be youth positive.   

The Knight in Protective Wheelchair Padding

Imagination, it is often said, is a wonderful thing.

It can make you big or small or even give you wings.

Henny knew imagination made him feel right.

Henny’s imagination turned him into a knight.

 

As a knight he fought dragons who breathed vicious fire,

As a knight he climbed towers that stretched higher and higher.

He was a different kind of knight, truly one-of-a-kind.

But he was brave and true…so he did not mind.

 

He rode across the land upon his trusted steed,

Charging from quest to quest and from deed to deed.

Yet his horse was not one that you would find in a stable.

His horse was one that came with a power cable.

 

Because in his mind Henny was a knight of a different sort;

Neither particularly tall nor exceptionally short.

His horse was metal, and drove with a flair.

Henny was a knight in a wheelchair.

 

Then on one day’s quest Henny came to a town,

Besieged by a nasty troll who had everyone down.

And he met there a maiden, let’s call her Penn,

And she sweetly asked him to bring their nightmare to an end.

 

“Oh good sir Henny,” she cried with a fright.

“This nasty troll is ugly, and he isn’t very polite!”

“Please do what you can to save my beloved town,

For my fair face is tired of wearing a permanent frown.”

 

And so brave Sir Henny drove his chair at top speed,

His mind and heart focused on the challenging deed.

The troll stood dumbfounded, his mouth hanging wide,

Upon seeing this town champion, brimming with pride.

 

And the troll backed down, as trolls often do,

When confronted with a knight who was so brave and true.

He laid his club on the ground and retreated to his cave,

Where he had a serious think about the right way to behave.

 

And Henny returned to the town, glory ringing in his voice,

While all around him the towns folk rejoiced.

And late into the night, the entire town was chatting

About that brave knight in protective wheelchair padding.

 

Henny’s imagination took him on so many quests,

And gave him so many ways to better his bests.

And yet with all his adventures, there was one unchangeable fact.

His life was a good one, and that was just that.

 

And for all of you out there, whose imagination has no stop,

Who may think that it’s not right to dream beyond the top;

Always remember Henny, the wheelchair-riding knight.

And how sometimes, just sometimes, imagination can be right.

Strength From Struggle

Today’s blog is about something personal. In fact, it’s about something that I have rarely addressed in any kind of public way; my struggle with depression in 2008. I have gone back and forth about whether this topic is right for a Disability Positive blog, but at the end of the day, I feel it as much a part of my story as my cerebral palsy. Remember, being Disability Positive is not just about celebrating difference, but also drawing strength from experiences. For me, this is one of those experiences.

First, some background and context. I was, at the time, a fourth year University student. In many ways I had the ideal post-secondary existence; decent grades, a campus job that I loved and a pretty big circle of friends. I had grown into Carleton’s go-to student voice on disability issues and had some ‘big man on campus’ vibes. I was happy (or at least I thought I was) and pretty popular. I had everything together. Then, at some point (not sure exactly when) early in the academic year, things started to slip.

As I look back now, I think I had become too comfortable in my social position. I had forgotten what I was there to do. I started by skipping class regularly (I could catch up, right), then slowly slid further downward. I stopped socializing for fear that someone would notice the change. I even stopped answering any emails, since I knew among them were life issues to deal with. Ignored responsibility piled up, as did unpaid school fees etc. I would go to work, but not do any work there, choosing instead to mindlessly surf the internet. At home, I would do nothing but watch TV. I had snapped.

It was pretty deep at one point. People started to notice, which made me retreat any further into this world. I kept saying I was “fine”, whatever that means, though I knew I wasn’t. Eventually, my awesome and amazing parents made the five hour drive to Ottawa and quite literally dragged me to help. Naturally I resisted, but they are wonderfully stubborn when they need to be. Over the course of three days, they got me registered with the councilor, sorted through my ignored paperwork and even cleaned my room. It was far from pleasant at the time, but as I sit here in reflection, it was the brutal wakeup call that some part of me had been craving.

Is it possible to experience a turning point in life at the age of 24? Yup, and that was mine. Since that time, I have found and married the love of my life, set up both a business and a registered charity, and established a pretty happy life. But I truly believe that I would not be where I am today had it not been for that year of downward spiral. It helped me to realize who I fundamentally wanted to be, and how to recognize my own struggles. Even as I am sitting here typing this out, for really the first time ever, I am feeling empowered and emotional. The experience taught me so much about myself, and for that I am forever grateful.

Be true to yourself. Be Disability Positive.     

A Performance To Remember

Today’s blog is a bit more of a ‘story time’ blog than some of my others, and it is a brief recounting of the story that really sparked my interest in human rights and disability advocacy. And without further delay, I invite you back to 2001…

I was 16 years old, and it was a family night out to see my brother (a long-time actor) perform in a play at U of T’s Hart House theater. This was a rare treat for me, as most of the ‘spaces’ he acted in were up or down multiple flights, and my wheelchair regrettably can’t levitate. We got there early, and as was our usual custom, went to inquire about pre-seating me due to disability. This is when the fun started.

The woman at the ticket booth, who we soon discovered to be the building manager, informed us that due to policy, me and my disability were not allowed in. She claimed it was a safety issue. We attempted to engage her on this issue, assuring her that we were in no worse safety situation than ANYONE else in the building. What followed was a heated back and forth on disability rights, with my long-time advocate parents and I on one side, and a very close-minded theater manager on the other. She had dug her heels in on the issue, as had we, and neither side looked likely to budge.

Before too long, this impromptu ‘performance of wills’ had attracted the attention of other patrons and theater staff, all of whom (at least all who spoke up) agreed with us. But this manager, despite the growing numbers of voices that had joined our ranks, had put her stake in the ground and would not relinquish. She held all the cards, at least from a theater perspective, and she knew it. We managed to get word to my brother backstage who came out, in full costume and told her that unless I was allowed in, he was not performing. When she refused again, he went back and convinced the rest of the cast to boycott the show. Being a group of liberal university actors, naturally they were on board.

The theater went dark, the usual expectant hush fell over the waiting theater-goers. But no performance was coming, other than the live ‘disability rights’ action drama that was on the verge of exploding in the lobby. One woman and her skewed sense of rules vs. a throng of active human rights resisters, with me as their unwitting leader, were in the midst of a showdown.

Eventually, the situation escalated. She called campus security to escort us from the premises, and my parents responded by saying “We are going in. If you feel like dragging us out by our ankles, be our guest.” We were in the middle of this maneuver when U of T’s finest arrived, clearly trying to diffuse the situation. She told her side of the story, and we told ours. They agreed with us, informed her that she had no grounds to deny us entry, and the battle was over. Our impromptu nemesis skulked away, clearly embarrassed, trying to safe face. We went in, as did the rest of our allies, and enjoyed a great show.

I have often thought back to this day. In reality, it was parents who had done most of the direct advocacy on the night, so why did it light a fire in me? Quite simply, it was the first time that I had ever experienced person-to-person discrimination. Not bureaucratic frustration, or structural injustices, but another human being considering me and my disability to be less than. It made something click in my head. I was not going to be treated like that again, and I was going to dedicate my university career and beyond to arming myself with the practical and physical tools to fight

It is these struggles, these moments in life, that Disability Positive Consulting is dedicated to learning from.

 

Lessons Learned

Today’s blog is about education and disability, with a twist. We all have things we wished we learned in school over the years, whether it be a particularly niche topic or a life lesson that we encountered late in life. I am no different. A lot of my lessons, though, have to do with my disability. And as I thought about blog topics, a question came to mind.  What are the things about my disability that I wish my adolescent self knew? So without further ado, this blog was born. Here’s my top 5…

1.     The Bureaucracy: The fact is that disability means paperwork. I may have seen glimpses of this in my youth, watching my parents fill out form after form, but I don’t think I ever appreciated just how extensive the bureaucracy surrounding my disability was. You have to get used to forms, and if you’re not proactive, you will get bogged down.

2.     The Job Hunt: I wish someone had told my teenage self just how crappy the job hunt would be. I know that it is crappy for a lot of us, regardless of disability, but I do wish I had been prepared for just how much my physical difference would impact my career search. My inability to do grunt work, for example, made finding that foothold extremely hard. Finding this out earlier may not have changed anything but it would have made it an easier to pill to swallow.

3.     Sexuality Success: I wish I had known that reframing sexuality, doing it your way, was a thing. I’ve written an earlier blog on this topic, but it is worth revisiting because it so fundamentally changed the way I look at my body. Looking back now, I can reflect on just how much I did not enjoy those first few experiences, trying to make my body work for ‘normal’ sex, and how I should have just let it go.

4.     The Community: I wish I had known just how cool the disability community really was. I wish I had appreciated my connections more, and wish I had got plugged into the community earlier. I am a much richer person for it, and I am now comforted by the fact that I’m not alone.

5.     The Power of Positive: Ah yes, the big one. I was always a pretty confident guy, but it wasn’t until a few years ago that I truly learned how powerful disability positivity I was. Seeing my physical difference as an asset rather than a barrier is the ultimate lesson that I would love my younger self to grasp. Whether it is my disability opening opportunities for me, the way it taught me to communicate, or the way it made me a more supportive husband, it’s been a huge plus for me. My disability positive journey’s been awesome and I wish I had started it sooner.

And there they are. I am sure there are more, just I’m that everyone’s list would be unique. But whatever age you are, take these lessons as you want. And if anyone sees my seventeen year-old self out there, send him this link!

It Makes Me Th-INK

My blog this week is a bit of a rewind for me, to thoughts about identity, disability and blue ink. First, a bit of background. Anyone who knows me knows that for many years I talked about inking myself with disability pride, in the form of the wheelchair parking logo on my arm. Then, almost five years ago, I did it. At the time I wrote about a Facebook note (my medium before blogs) about the way that getting it made me feel. And now as we approach my five year tattooing anniversary, I thought I’d offer some more tattoo musings.

You will be happy to know that I still love it. In fact, I love it for so many more reasons than I did when I first had it etched into my pasty arm, beyond the obvious I still like the way it looks. For a start, it was the first day I met the amazing woman who is now my wife. For another, it represents my disability positive career turn and reminds me every time I glance at it why I am doing what I am. Lastly, it has been a huge confidence boost for me and the way I embrace my difference.

When I first did it, I talked about how it helped me define my disability. Here is a snippet from that original note:

And so my tattoo is my way of taking control of my disability and my identity. I am branded now, but not by society, but by my own choice. My disability does not define me, I define it. My physical limitations are most certainly still here, but I have grabbed my disability and made it a trait to embrace. The tattoo, to me, represents a very true part of me. Yes I have a disability, but on my own terms.   

In reading this over again, I am struck at how this was really the seed of disability positive thought in my head. It was the step I needed to take to start this amazing road that I am now on. As I look at the tattoo now, I feel that same empowerment and strength, it has just reached a new level. I have now devoted my career, and taken the leap as an entrepreneur, in large part thanks to that tattoo and the way that it allowed me to be truly empowered.

Let me be clear that I am not saying to be disability positive you have to have it inked in your skin. But whatever you draw empowerment from, hold on to it and celebrate it. Whether it is a family member, a movie or even a particularly hot article of clothing, embrace the feeling that it gives you. It just so happens that my mark is a tattoo. And as I look at it, I can’t help but wonder…if one splash of ink can lead to a whole career and identity, what could a second one do?

But I suppose that is a thought for later…

Disability Positive Parenting

For today’s blog, let’s talk disability positive parenting. Now anyone who knows me may be raising eyebrows at this point, because I am not yet a parent. But that’s not the subject of this blog. I am, instead, talking about the parents who raise disability positive children, and who foster an environment that celebrates difference. Basically, I am talking about the lessons that I took from my parents as an activist and a person.

Firstly, a bit of a disclaimer. I am incredibly lucky in my family life. I had two loving parents, still together after 35+ years, and two brothers who (despite a fair amount of sibling rivalry) love me. I grew up with enough food on the table, a roof overhead and a strong familial support system. So I know how fortunate I am to have this family dynamic, and I am fully aware that this fortune has had a part to play in my disability positive upbringing. But it is not the whole story, far from it. I firmly believe that there are more ingredients in this recipe than stability and love.

The fact is that raising a child with a disability is different. Not necessarily better or worse or harder or easier, just different. When I came into this world in the 1980s, disability was still viewed as one of the ultimate tragedies in parenting. Society was, and to some degree still is, so focused on the struggle that will befall disabled children that they indoctrinate parents with buzz words; like protect, help and caution. Often, parents of disabled youth will go the extra mile to support their kids. Sometimes, the extra mile is too far.  Over protection, or too strong a guiding hand, is something I’ve seen all too commonly over the years.

As I am sitting here writing this, I am thinking about the one value that is the key to disability positive parenting, and I keep returning to the same thing…letting mistakes be made. Did my parents support me? Absolutely. But they also let me screw up. Did they lend a hand? Yup, but they also forced me to push my own boundaries and discover my own limits. They were always there, but not always right there. Those lessons, more than any others I’ve learned in 30 years, made me the man I am today. Whatever my missteps were, I was allowed to make them.

So many parents want to protect their disabled children because life is so different and potentially challenging. Out of love, they want to help. Out of love, they want to do stuff on their behalf. And while I cannot judge anyone’s parenting decisions, I believe that there is significant value in letting choices, good, bad and suspect, be made. That, in the long run, will prepare children – disabled or non-disabled – better for what lies ahead.

And finally, to my own parents, thanks for being there, but not too close, for the good, the bad and the ugly… you’ve taught me so much…including when I’ve messed up!