My Life (Technically Speaking)
- by Luke Melchior
At the age of five I was diagnosed with Duchenne muscular dystrophy, a terminal muscle-wasting disease that has been systematically robbing me of my physical abilities since birth. For past generations, the prognosis was grim. In fact, the very idea that people with my disability could lead productive, fulfilling lives was far-fetched at best. Luckily for me, however, I was born in the early ‘70s, a time when the disability and assistive technology movements were just beginning to take shape.
It was against this backdrop that, at age 11, I got fitted for my first power wheelchair. It was a dinosaur by today’s standards. It had large rear tires propelled by pulleys and fan belts and could reach the breakneck speed of five kilometres per hour. Be that what it may, it was about to reveal a world of experiences that hadn’t even occurred to me while I was brooding over my lost walking ability. For the first time, I was able to “walk” to school with my friends and take part in gym class. It turns out that I make an awesome floor hockey goalie!
With floor hockey now under my belt, I was invited to participate in a wheelchair sport called “Motorball” (think Murderball but with a large bouncy ball). Despite a poor tryout, I was nonetheless invited to join a local team consisting of older Duchenne teens and young adults. That was a fun period of my life, complete with harrowing tournaments and heart-warming camaraderie. Sadly, though, within five years of joining the team, all of my original teammates had succumbed to respiratory failure, a condition that was responsible for virtually every Duchenne death up until that point.
Tragic as it was, technology was about to change things for me once again.
A therapist from the institution where I resided was in the midst of old-time library research (yes, they used to do it that way before the Internet era) when she came across a paper about a new Duchenne treatment called non-invasive ventilation. Needless to say, I jumped at the chance to be a real-life guinea pig for this novel technology and lo and behold, it worked! Words can barely describe how I felt at the time. It could best be summed up with an arcade racing game analogy: my time was about to expire when I reached the extended time checkpoint, reset my clock, and continued to race.
Now I had some unexpected living to do! I was a man on a mission; I was going to do what everyone was doing. So I decided to improve my skills, get a job, live independently, and get married. But how was I going to do all that given my significant disability? Hello Internet-connected devices! Using my computer (that I operate with a trackpad and on-screen keyboard), I was able to manage my care workers, complete my college coursework, maintain employment, and meet my soulmate, to whom I have been happily married for more than seven years.
Step by step I was climbing up Maslow’s hierarchy and had arrived at the final stage of needs fulfilment—self-actualization. That is when I got introduced to CanAssist, a University of Victoria entity that specializes in making customized assistive technology for people with disabilities. When CanAssist created a speech holder for me, I was immediately hooked, like a kid in a candy store; I had just entered a world of pure imagination. The CanAssist team is able to create virtually any piece of assistive technology that you can dream up. It wasn’t long before I let it be known in no uncertain terms that I wanted to work there.
Within no time I found myself working there and loving it. During my tenure I have been able to do many exciting things. I got to try out an accessible pool cue for the local media, demonstrate software for Premier Christy Clark and invent something cool. In terms of my invention, CanAssist had asked me if there were any technologies that would make my life easier and the first thing that came to mind was an accessible smartphone. So in my spare time, I devised plans for a smartphone controller and CanAssist brought my idea to life! I now use my smartphone for everything from keeping in touch with people, to writing down my thoughts as they come up.
I don’t know where my technology journey will take me next but I have no doubt it will once again reveal a world of new experiences to me.
Check out the website (http://engage.gov.bc.ca/disabilitywhitepaper/), join the conversation, and please share the link with family, friends and colleagues so everyone has the opportunity to have their say about disabilities in BC.
CanAssist is dedicated to helping people with disabilities improve their quality of life, with a focus on promoting independence and inclusion.
What the Heck is a White Paper?
Did you know that the number of people in B.C. who identify as living with a disability is almost equal to the population of Vancouver Island?
Looking at this comparison, it is easy to see why the B.C. Government has set the vision for B.C. to become the most progressive jurisdiction for people living with disabilities in Canada.
In 2010 BC endorsed Canada’s ratification the UN Convention on the Rights of Persons with Disabilities (UNCRPD). And part of our commitment includes ensuring that any discussion of disability issues is done with the disability community – ‘nothing about us without us’. It is from this commitment that we are moving forward with the vision of making BC a fully inclusive place to live, work and play.
Over the next ten months, government is going to be consulting with British Columbians, developing a white paper and hosting a summit on reducing barriers and increasing accessibility for people with disabilities in British Columbia. This process will be led by a leadership team that includes government, the disability community and the business community.
But what, you may ask, is a white paper?
White paper is a term that’s evolved over time, but in our case our White Paper will be a document that reflects the voice of British Columbians in response to the question ‘what can we, as a society, do to reduce barriers and increase accessibility for people living with disabilities in BC’?
So, beginning on December 3rd and lasting until March 11, 2014 we are asking you to participate in the consultation.
We want you to share your thoughts and ideas, and we have set up many ways for you to participate which you can access on the disability consultation website – you can join an online discussion , attend an in-person community consultation , host your own Disability White Paper conversation, email or phone in your ideas, or engage in the discussion on social media.
Then, using your comments and ideas as a guide, we will develop a White Paper that will look at how we can make BC more accessible and inclusive.
From there we will bring together leaders in the disability sector, business community and government to discuss strategies for how the ideas and actions presented in the White Paper can be implemented in communities, work places and across government.
I know, it sounds like a big undertaking, and it is. That is why we are reaching out and asking everyone in BC to join the conversation, and to make your voice heard.
Disabilities affect us all –whether we live with a disability ourselves or have family members, friends, neighbours or colleagues who have a disability.
What about you? Is there an experience or situation that you would like to share?
Check out our web site (http://engage.gov.bc.ca/disabilitywhitepaper/), join the conversation, and please share this link with family, friends and colleagues so everyone has the opportunity to have their say.
About our guest blogger
For the next year, Susan Mader has traded her Communications Director hat at the Ministry of Social Development and Social innovation for the role of Executive Director for the White Paper Consultation. She is excited about the opportunity to engage with British Columbians around how we can all work together to increase accessibility and make B.C. a more inclusive place for everyone. Susan has an MBA, a BA in psychology and is a certified professional coach. When Susan isn’t working, she likes to spend her time outdoors – hiking, kayaking, and travelling.
Breaking The ICEWest
Hello. My name is Melinda Rundle and I have severe physical and communication challenges. I would like to tell you about the Breaking the ICE West conference that I recently took part in.
To give you a bit of background, the first thing that sets this conference apart from others, is that it is an event created by and for individuals who use Augmentative and Alternative Communication (AAC) and their families. It is an event that brings the community of people who use AAC together to share ideas, learn from each other, and create new friendships.
This year’s conference was a successful and wonderful event, and I would like to share my experience with you.
We all gathered at the gorgeous Nikkei Cultural Center in Burnaby, prepared and eager to share experiences and ideas on the topic of change. During the morning session, a panel of five people who have communication challenges addressed the audience using their speech generating devices. I was honoured to be a part of the panel, and I will share some of my presentation with you:
I was a typical teenager in terms of my hopes and dreams for my future.
One of these dreams was to move out of my parents’ place and to strive for independence and fun. Oh yah – and to go to college.
I was totally stubborn and insisted on moving from my family home in Okanagan Falls to Vancouver because there weren’t many group homes or services for differently abled people where we lived; we didn’t even have many sidewalks that were accessible! So moving to Vancouver was the best option for me.
So my dedicated social worker at Sunnyhill Hospital and a few other people found the group home I’m living in now. When I found out my dream of moving out was going to come true, I had never felt so excited and scared in my entire life. Here was my dream staring me in the face and I didn’t know whether to celebrate my excitement or cry in fear of all the changes that were ahead! How was I going to cope without my family? How would I go to appointments? I didn’t know how to do my own banking or fill out a simple form. I WANTED TO TAKE MY WHOLE FAMILY WITH ME!
After shedding many tears, I decided to face my fears and take the plunge. A few weeks later I was all moved in and settled…
I’ll be totally honest with you – I hate change as much as anybody! But I wouldn’t be the successful advocate I am now if I hadn’t experienced big changes. Change is an inevitable part of life whether you’re differently abled or able-bodied. I feel we must embrace it in order to have a happy and fulfilled life. That’s what I’m doing – who wants to join me?
Speaking up for myself and others
The morning session of ICEwest was followed by an afternoon town hall meeting to explore the topic of change. Only those who use AAC to communicate were allowed to participate. As change has always been a challenging aspect of my life, I found the afternoon session very helpful.
In sharing our experiences and ideas with each other, I realized I wasn’t the only one who struggled with life changes – everybody else did too! I found this totally comforting. I hope more AAC users will have the opportunity to attend the ICEwest conference when it is held again in the future.
I am writing this as an advocate for both the Communication Assistance for Youth and Adults program, which offers AAC services to adults in BC, and on behalf of my fellow AAC users.
A little more about me: I live in a group home with four other differently abled women. I do Morse code with my head in order to communicate on my dynavox and my desktop computer.
I serve as an advocate for people who have communication challenges on the board for “Communication Disabilities Alliance Canada” as well as on the medical ethics committee at Sunnyhill Health Center. I enjoy spending time with my family and church family, surfin’ the internet, and being a non-stop chatterbox!
Ari Kinarthy – Gaming on an Equal Playing Field
I am twenty four years old. I love music and video games, and I am a very social person. I also have Spinal Muscular Atrophy – there are three different types depending on the severity, and I have the middle category. It is a muscle weakness, and as the years go by, my muscles get weaker.
When I was young, around 6 years old, I could move my arms pretty close to normal, but as the years go by, I now have close to no movement at all. I still have all the feeling in my arms – I am just losing the muscle strength.
Unfortunately, people seem to assume that if you have a physical disability, you have a cognitive disability as well. But they are wrong.
At first, losing the movement in my arms was a little frustrating, but then I realized how much technology is around, which is pretty cool.
Tech for tech
One of the things I love to do is play video games, and when I was 16, it came to a point where I couldn’t play anymore. So for two years my mom helped research what technology was available to help me get back to playing video games.
We found a place called GF Strong in Vancouver, met with a technology expert, and I tested a bunch of technology for the computer. And then two years later, with the help of my high school SIDES (South Island Distance Education School) I was able to get the technology I needed. So now, I can play with anybody online, at a competitive level. I can play games as well as anybody else can.
There are actually three separate technologies that I combine to help me play the games. One is a sip and puff straw, which I sip and puff Morse code into. The code goes into the computer and then gets translated into the game mechanics. And then I have a pen, which I use as a mouse to hover over a pad on the tray of my wheelchair, and I have individual switches that are also for the games, which act as different keyboard functions.
I actually have a few Youtube videos that explain how the technology works. I know about three or four people with disabilities, who loved playing games in the past but are unable to play high action competitive games anymore – but only just some “take turn” games. So, I wanted to make videos to encourage other people with disabilities to understand that, with help, they can play again.
The reason I play video games, and why I love them so much is because it is an equal ground for people with and without disabilities. I can play at a competitive level and nobody even knows I have a disability.
It makes me, and probably a lot of other people with disabilities feel like we are at the same level as people without disabilities.
More about Ari
Ari is the recent winner of the International Soundbeam competition, and considers music to be his biggest passion. His main goal, “in the far future” – is to write music for video games, t.v. and the movies. A lot of people have actually said that his music sounds like a video game!
Throughout BC, people with disabilities are making important contributions to the fabric of our society. Join our guest bloggers to learn more about what people, organizations and employers are doing in communities throughout the province. For more info, check out: http://engage.gov.bc.ca/disabilitywhitepaper/
How I Became a BiPolar Babe
Did You Know? Mental Health is considered an “invisible disability”, and annual losses to the Canadian economy due to mental illness in the workplace is over $30 billion. Workplaces that promote organizational wellness support both employee health and a strong bottom line, with reduced absenteeism, turnover, health and compensation costs.
Meet Andrea Paquette, who up until taking over as the Executive Director for the Bipolar Disorder Society of BC , was a public service employee with the Ministry of Social Development and Social Innovation.
Having been diagnosed with bipolar disorder for the past 10 years, I have learned what it means to reinvent myself and my life to both manage the illness and pursue a healthy way of being.
I suffered at the hands of a major breakdown at the age of 26 and experienced mania, depression, psychosis and a suicide attempt in a short span of time. After my second hospitalization I ventured off to South Korea for two years. I thought I would never return home to the place where I experienced so much suffering. Overseas, I healed in time while teaching small children English and soon became a University Professor and after two years decided it was time to return to Canada.
Bipolar Babe is born
I had a burning desire to share my personal story in any way that I knew possible and with a friend we created a website named www.bipolarbabe.com. The name came to me as a t-shirt idea months before which had prompted me to action. The website was a masterpiece in my own mind, sharing a babe blog of my own, a forum for people to share; and an interactive platform that encouraged people to talk about their mental health. I also showcased my personal story on the site. During this time I was approached by numerous media outlets including CBC and Vancouver Straight Newspaper and many of them were wondering who is this Bipolar Babe?
Much more than a website
In the meantime, I was asked to share my story by a friend at his own non-profit organization and the bookings spawned from there. It was my dream to speak in schools and soon this became a reality as I shared my personal journey with kids in the classrooms. It didn’t stop there as I ventured into doctors’ meetings, psychiatric facilities, colleges, universities and workplaces.
While meeting many amazing people along the way we formed the Bipolar Disorder Society of BC, a non-profit society later to be registered as a Canadian charity in 2010. The society now employs six staff with me as Executive Director with a board of six members. I fulfilled my dream as I recall brainstorming titles for this non-profit in South Korea in my bedroom late at night about my future. I always knew in my heart that things would unfold as they were meant and for this I am grateful.
- Andrea Paquette
To learn more about organizational wellness, visit the Ministry of Health, and find out how leadership style, management practices, the way in which work is organized, employee autonomy and control, and social support all contribute to health in the workplace.
By reducing stigma, and supporting mental health in the workplace, B.C. is advancing its vision of becoming the most progressive province for people living with disabilities in Canada.
Profiles in Diversability
We’re excited to introduce you to four of BC’s active self-advocates. Self-advocacy means speaking up and speaking out for your rights. It is about being able to call upon the support of others, while keeping control of your own resources, health choices and life decisions.
In the past, individuals with developmental disabilities were frequently labelled with disparaging terms. People were often put in institutions, segregated schools or workplaces with little or no pay. Thankfully, many of those attitudes have changed, in part due to the strength and commitment of self-advocates who dedicate their time to education and awareness, encouraging people with developmental disabilities to participate in their communities.
We asked our authors to reflect on their recent visit to the legislature to meet with Social Development and Social Innovation Minister Don McRae, and to share what self-advocacy means for them.
My name is Amanda Arnet, I work for the Ministry of Social Development and Innovation. I got the privilege of meeting Don McRae. It was great to meet him and I found that he is also funny.
I’m an assistant administrator and I work three days a week. I deliver the mail and fill up the printers and photo copiers with paper. I also enter data into the computer and do any odd jobs that they ask me to do. I love the job I have.
My name is Sheenagh Morrison. I’m a self-advocate. I wanted to meet Don McRae because I organize events for December 3, the International Day of Persons with Disabilities, and I’m in the process of trying to change the word [disability] to diversability. I wanted to let [Minister McRae] know about it, and ask him a few questions about the Persons With Disability benefits and if there was going to be changes to it in the future. It was an honour to meet him.
I’m involved in self-advocacy work by being on the advisory board. I work at Thrifty Foods and I’ve been there six years now.
Hi, my name is Michael, and I have grown up with a diverse ability. Since I was a young adult I have had a strong passion for standing up for people’s rights. My passion for self-advocacy has grown over years, and has made me who I am today. I started on the board for the Beaufort Association in 2005. This is where I began my role as a leader for people with diverse abilities. Over the years I have grown from the local to the provincial self-advocacy scene by joining other groups and meeting with my MLA consistently.
I attended GP Vanier Secondary and this is where I had the privilege to meet Don McRae, as he was a school teacher at this time. Many years later, Don McRae was elected as MLA for the Comox Valley and this is when I started to meet frequently with him to discuss issues such as Social Development and Social Innovation, Income Assistance, Health Care coverage for persons with disabilities and many other topics regarding the assistance one gets from the Ministry of Social Development and Social Innovation (MSDSI).
I recently met with Don McRae at his local office to discuss some of the issues self-advocates were having regarding MSDSI. Through our discussion we may have gotten a bit off topic, as we started to talk about our upcoming trips that we were both taking to Victoria!
I was going to Victoria for a conference on “My Community Too” where I and a fellow self-advocate put on a workshop on what it’s like to travel with a diverse ability. Minister McRae was going to be at the Parliament Building in meetings at the same time, so Don McRae invited me and a couple fellow self-advocates to meet with him to discuss International Day for people with diverse abilities and other common topics that self-advocates have. We were also very privileged to have a tour of the House of Commons. Do you meet regularly with your MLA?
My name is Shelley DeCoste, I am a self-advocate from Kelowna.
I wanted to meet Minister McRae, to let him and other people know that people with diversability (disability) are able and we want to contribute and be a part of communities.
We have goals and aspirations, just like anyone, we just need a little more support from time to time.
It’s time that our community, province, and country looks at what we can do! And sometimes we have to think outside the box to see the potential.
We don’t want to be looked at as a burden to our communities, we want to show that if we have the right support and help we can and want to be a part of BC and Canada; we want to work beside our neighbours. Doesn’t everybody need help from time to time?
At the present time, I work 2 days a week for Pathways in Kelowna as the self-advocate liaison. One of my jobs is to make things easier to read by putting them into plain English for people with low reading abilities. I love my job, but I wish I could work more. I also volunteer a lot in my community. We deserve to be a part of our communities, don’t we? Look at what we can do!
Together we can make things work. Thank you so much for your time and the all the best to you.
Hey Dad did you see the goal I scored?
“Hey Dad did you see the goal I scored? It was top shelf!” I nod and respond by saying “Yes it was a great shot… look what happens when you practice!” In reality I never saw the puck soar across the goal line. I saw him shoot the puck and then heard the crowd cheer, so I concluded that he had scored.
Hi there, I am Scott. I am the father of two very active boys. I am also an elementary school principal and a person with extreme vision loss. Thinking about my disability is not something I do on a regular basis as I was born with it, and have had many years to adapt and develop successful coping strategies. Having said that, my vision loss is an integral part of who I am and it has shaped the way I conduct my life.
Filling in the gaps
Throughout my life I have had to constantly “fill in the gaps” left by low vision. Although you would probably not notice that I have limited vision, the reality is that I am legally blind with zero vision in one eye and less than twenty percent vision in the other. What does that really mean? Well it means that I am unable to drive a car, which is probably a good thing! I let my students know that I am also not allowed to fly planes, and highly recommend that they run off the plane should they ever hear me welcome them aboard as captain. Yes, humour is also very important to me and when possible, I try to keep things light. I will admit that once or twice a year I might feel a bit sorry for myself because I cannot drive my kids to practice or need to take a cab to pick them up from school but after an hour or so my pity party comes to an end and it is back to reality.
A unique perspective
As an elementary school principal I have the great fortune to work with young people and help them become thoughtful and respectful members of our community. I am in a position where I get to speak openly with kids about their fears and their challenges and then work with them to put plans in place to help them enjoy success. Having been bullied myself, I can empathize with kids who feel like outsiders, and I work hard to help them connect with the school community. When kids struggle with academics or behavior I help them activate plans to get them feeling good about themselves. I will often talk about my experiences and let them know what things used to be and still remain areas of difficulty for me. I would like to think that kids see me as someone who struggles at times but who works hard to overcome the obstacles that are put in my way. Am I a hero? No. I can live with being a role model but I sure do not want to be a hero. I am someone who leads by example, who tries his best to make the educational experience for kids a positive one, and who works hard to be a connected and engaged father and husband.
Living the dream
Although there are definitely challenges associated with living with a vision loss it has not prevented me from living a “normal” life. I often joke when people ask me how I am doing by responding that “I am living the dream”; but in all truth, I am living the dream. I have an incredibly supportive family, great friends, a fantastic job, and I am healthy. What else can anyone ask for?