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Now you see me, now you don’t: My life with invisible disabilities

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For a long time, I’ve felt like I had one foot in the able-bodied world and one in the disabled world. I occupy a weird space where I don’t really belong in either world. On good days, I can “pass” as an able-bodied person; no one knows I am sick and struggling unless I choose to tell them. This ability to fly under the radar has often been a double-edged sword.

Here’s an example: In 2010, Vancouver hosted the winter Olympics. It had been a lifetime dream of mine to someday, somehow be involved in the Games. I was thrilled when I received a call from the organizing committee asking me to serve as an athlete’s Marshall for the Opening and Closing Ceremonies. When I filled out my volunteer application, I had the opportunity to disclose that I had a disability, but I chose not to. I was afraid that that might prevent me from being chosen to volunteer - at that point in my life, I had no experience identifying as disabled and didn’t trust that I would be recruited based on my abilities.

The first day of training was the first of four dress rehearsals for the Opening Ceremonies. When I accepted the position, the only explanation I had was that I would be ‘elbow deep in athletes.” As it turns out, my team was in charge of looking after the athletes before they entered the stadium for the Parade of Nations and then getting them into their seats as quickly as possible once they’d done their lap around the stadium. The rehearsal for this meant charging up and down numerous flights of stairs over and over again. Not a challenge for an able-bodied person, but not ideal for someone with spinal cord damage and issues with depth perception, who was also recovering from several months of chemotherapy. It was exhausting! I had to concentrate hard to avoid falling down the stairs and by the time I got home each night, I was utterly exhausted. While I wouldn’t put myself through this again, it was a sacrifice I was willing to make in order to fulfill a cherished dream. No one ever suspected how difficult that month and a half was for me. Looking back, I have absolutely no idea how I managed it, save for sheer force of will.

To a casual observer, I look like a reasonably healthy, able-bodied person, but looks can be deceiving and in reality, nothing could be further from the truth. I am someone with invisible disabilities. I live with Neuromyelitis Optica (NMO) a rare disease where the immune system attacks the spinal cord and optic nerve, leading to blindness, paralysis and in the worst case, impairs the ability to breathe, which is fatal. This disease has damaged my spinal cord leaving me with permanent numbness in my arms and hands and affects my ability to know where my body is in space. I also have inflammatory arthritis which causes excruciating joint pain. I live with chronic pain due to both of these autoimmune disease. I also experience migraines. I was born with a hearing impairment which has worsened over the years and I now wear hearing aids in both ears. All of these issues significantly impact my life, but are invisible.

Because the nature of my chronic illnesses are unpredictable and evolving, I sometimes need to use mobility aids, which make my disabilities visible for a period of time. I have a walking cane that I use occasionally when my knee joints are painful or when I am experiencing the loss of feeling in my legs, which can make me unsteady. When my NMO or arthritis is flaring, I have to have steroid treatments to reduce the inflammation and get things under control. Steroids give me migraines which affects my depth perception and I’ll have blurriness and double vision. When this happens, I resort to using my white cane to help me navigate. This has been confusing to my neighbours, who see me standing at the bus stop or walking my dog with my white cane one week and the next week see me driving my car. I am sure they are trying to figure out how the “blind woman” is driving! My level of disability can change from day to day or week to week. 

I have slowly been growing into the role of being an advocate over the last 10 years, not only for my rare disease, but also for chronic illness and disability. What’s helped me immensely is connecting to others living with similar health challenges through social media and the volunteer work I do. I learn so much every day through my interactions with other advocates, their willingness to speak the truth of their experiences, even when it’s hard, informs my life and the work I do. 

Sharing our stories is how we become less invisible and I am grateful for the opportunity to share mine here over the coming months. My hope is that if you are reading this, I can help you understand what this experience is like from my personal perspective and perhaps help you to think differently about what a disabled person “looks like”. I hope you will join the conversation. It’s an important one.

***

About the authour: Lelainia Lloyd is an Ambassador with the MS Society of Canada and a Patient Advocate with the Guthy Jackson Foundation. She serves as a mentor with the UBC Interprofessional Health Mentors Program where she teaches future health care providers about patient-centred and collaborative care. Lelainia was a Paralympic torch bearer in 2010, a Rick Hansen Difference Maker medal bearer in 2012, and the recipient of the Queen Elizabeth II Diamond Jubilee Medal in 2015.
She has published on MS Society’s someonelikeme.ca, NMODiaries.com, and tatterededge.ca. Follow Lelainia on Twitter @tatterededge.



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How art helped me heal after an SCI

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Before my injury I had the world by the tail, so to speak. Active, healthy lifestyle. Fancy car. Family and friends and great relationships. Successful business. It was an exciting life, bringing new products to market, traveling to exotic locations, going to big fancy shows. And then I woke up in Vancouver General Hospital Emergency, Spinal Cord Intensive Care Unit. My life had been brought to a standstill.

Everything I had, everything I had done, was now in the past. I was frozen in an immovable body, with tubes going into and coming out of everywhere, machines beeping, buzzing and wheezing. Fast-forward a few months and I’m touching a civilized existence again. But what am I to do? Where do I go, and how do I justify my existence on this earth based on some kind of contribution.

The answers were not to come easily. I was used to a fast-paced lifestyle, where mountains got climbed, rivers forded, towers built. I had energy, drive and determination, combined with physical competency. But now I could not lift a finger. I moved to an apartment and felt equally out of place and without purpose. Living in a box full of boxes! If the sun was shining, I went out. If not, I sat inside and brooded. I sat. I stared. I self-deprecated. I wallowed. What was I here for?

I had a computer, but I couldn’t do what I did before. I couldn’t run. I couldn’t jump. I couldn’t ski. I couldn’t ride a bike. I was overwhelmed with “I couldn’ts”. I received career guidance, but all opportunities seemed to point to what I was doing before, which didn’t seem possible or practical. Like a car starting and stopping and starting and stalling, unable to get going, I was spinning my wheels and going around in circles, unable to find a place to go or a means to get there. I was used to building things, making things happen, and working with designers. I wasn’t doing any of that anymore. I felt like there was a mismatch between the person I was supposed to be and the person I had become.

This changed the moment I was challenged to draw with a mouth stick. I became a different animal when my competitive instincts were aroused. This was done carefully, by someone, able-bodied that drew with a mouth stick in order to experience the challenge equally. I could not refuse. I was stimulated to try, as competitively as I could. 

Fiercely I tried and latched onto this new outlet to fill my need to build, to create, to present something to the world - something that could possibly be great. I went to the studio every day, worked hard, gained skills, and increased my understanding of the technical form. This was the outlet I needed.

Competition alone, was not the determining factor, however. I had been challenged to do things before. Why had that not worked? Because it was the same thing and this was something new. A spark of possibility in a completely unknown territory. I hadn’t exercised my artistic abilities since my elementary school days; times that bore no resemblance to these.

So I likened myself to a potential master. What would Leonardo do? How about Michelangelo? Brugel? Durer? These were just names on the covers of books, but they became mysteries to solve. What was their secret? What was the nature of their abilities? Could I mimic their craft? Now I was building again. I was developing. I had a mission. My mind had been opened.

Painting became my new love and I was unable to let her go, afraid that if I stopped the chase, I might possibly break the spell. My talents, my motivation, my drive, my enjoyment might disappear. So I stayed on with the quest - a horsemen pushing his beast.  At some point it must stop for rest but I may not start again. So I drove on.

Then one day I did stop and I looked around to see all that I had done. I noticed that the world was beautiful again. There is something great and wondrous about trying to bring beauty into the world. If you create just a little bit of it, then the world is a better place. That is a fine achievement and a sense of fulfillment results.

Something else happened. A flower of creativity opened. I felt inspired, motivated, and driven to create more. Not just paintings, but poetry, short stories, songs, and novels. The pent-up frustration had turned into a fountainhead of production. Things had to come out and an avalanche was unleashed. Suddenly confidence emerged. If I had an idea, I could turn it into something. This was a great feeling. I felt abilities coming from everywhere. I was no longer stuck, shackled, or withheld from participation. I was blossoming and growing into something bigger. Challenged due to my disability? No. Now I felt like anything was within my grasp.

I gained new, great tools, ones that I did not have before. The ability to foresee a vision, to consider the possibilities, to venture into the unknown, to try, to risk failure, but fearlessly push on and succeed in the end. I gained new perspectives as if exploring new worlds.

I don’t suggest that within everyone lies a painter, poet, novelist or songwriter. But within every each and every one of us is a creative spirit. So, in the most difficult times, when we are searching our souls for the tools to rise above great challenges, we may only need to reach within, and firmly grasp the tools we all have. Those that give us the power to explore and to express. It doesn’t matter what the outlet is, or how perfectly we execute our craft. Your achievement may be as humble as building a better omelette, or it may be as grand as designing a space station. What or how big is not the point. Creativity leads to productivity, which leads to the feeling of accomplishment and achievement. Dabble in creativity and feel your power; just give it a chance.

***

About the guest blogger: Art Jonker (Artorius) is a thriving painter, poet, writer, performing artist and businessman. You can see sample of his work at houseofartorius.com.
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Employment tips for people with disabilities

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Did you know that October is National Disability Employment Awareness Month? This month individuals and businesses across Canada will create conversations to help increase the awareness about the benefits of hiring people with disabilities.

The unemployment numbers with people with disabilities are significant; only half of Canadians with disabilities are employed. Social stigma surrounding disability and a lack of understanding about the disability experience, along with inaccessible public buildings and offices, are major obstacles that still need to be overcome in order to change these numbers.

Important work is being done across the country to reduce stigmas and stereotypes and make public spaces more accessible, but what can someone with a disability do to find work now? Below is a personal story from Stephanie Carvalho, Equity, Diversity, Inclusion Program Administrator for Human Resource Services at the University of Alberta that talks about her personal struggle with unemployment as a woman with a disability, and her tips and resources if you’re having trouble finding work.

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When I was asked to write a blog post about National Disability Employment Awareness Month, I was excited to talk about this extremely important topic of disability employment. As a person with a disability, I personally have been unemployed twice and didn’t get my first job until a year after completing my degree at the age of 26. And I didn’t take the typical avenue to find employment either. I joined a disability employment agency to assist me in finding work, and after a year, they helped find me a volunteer work experience placement that eventually turned into meaningful full-time employment. 

Towards the end of 2011, I participated in a work experience placement with the Employment Equity Program in Human Resource Services at the University of Alberta. I was excited to return to the university where I learned and experienced so much as a student, and wanted to help contribute in whatever way I could. The placement gave me valuable on-the-job experience and skills, but it also allowed me to demonstrate my abilities and showcase my strengths. The environment I was in, including mentorship from my supervisor, allowed me to grow as an employee and to add my talents. Now I manage workforce diversity data, support my team with planning and executing educational events, and I also co-deliver workshops on human rights, sustainability, and diversity and inclusion in the workplace. 

While my story does end in gainful employment, this doesn’t really touch on the mental and emotional experience of that year, and how it felt to be constantly doubting my skills, feeling hopeless that I wouldn’t ever get a job, and trying everything and reaching out to anyone I could. I had no professional network, and relied on my adviser at the employment agency to guide me. I was lucky that I had a supportive family, but it was so difficult to want to work, but not have the experience or access to networks to even get an interview. 

Since I began working in human resource services, I’ve gained invaluable experience working with various people (with and without disabilities) by helping them find work-experience placements like mine. Finding employment is hard, and is compounded if one faces additional barriers like a physical disability, so I want to share what I've learned along the way, and help increase the representation of people with disabilities in the workplace.The tips below are a starting point and are definitely not all that is available, but would be a good start to your employment search.

Employment tips and resources for people with disabilities:
  • Have an idea of your strengths and what type of environment you would work best in (no one understands you better than you). Remember to first engage with yourself and your goals to help drive your job search. If you like to work in a quiet environment, front line work perhaps isn’t for you. This also includes what you might need in terms of physical and technological accommodations. 
  • Have a career support counsellor review your cover letter and resume to make it as strong as possible. Hiring organizations compare the skills they're looking for match to the skills and experiences outlined in the resume. Gaps in resumes are usually red flag for organizations, so a skilled career counsellor can help guide you in navigating those hurdles and offer tips on interview and post-interview protocol. 
  • Research local agencies that work with people with disabilities as they may have resources and networks that you can be connected to. Also, other agencies will have supports for persons with disabilities that also serve a specific population such as indigenous employment agencies, newcomer centres, or youth services. Often times these organizations will have career counsellors where you can get a resume reviewed, and guidance with how to frame lack of work experience.
  • If you are able to, volunteer and network. References are important and networking will get your name out. This is consistently been proven to be the most effective way of building a network and finding work. 
  • Your provincial government has services for people with disabilities, and their websites are a great place for information. 
  • The federal government also has an online job bank, as well as helpful information for employment-seeking people with disabilities.
  • Two disability-specific online job banks are WORKInk, a dedicated space for job postings by equity employers offering inclusive employment and Lime Connect, an online resource that has job postings, professional development offerings, coaching and networking events.

Hopefully these tips will help you get a foothold in the employment market. Meanwhile, we’ll all keep working towards overcoming the biggest hurdle to employment for people with disabilities: educating and changing the perceptions of employers. Through discussion and learning, employers can come to understand that people with disabilities are an untapped workforce who are ready to transform the way business can be done.

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About the guest blogger: Stephanie Carvalho is the Equity, Diversity, Inclusion (EDI) Program Administrator for Human Resource Services, University of Alberta. She received her Bachelor of Arts in 2010 from the University of Alberta and has been working in the field of equity for six years.

If you have any questions for Stephanie, please send them to info@rickhansen.com.



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Shaping the landscape of accessible television in Canada

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The idea of making television for people who are blind or partially sighted is often met with a genuinely unassuming question from people who are unfamiliar with the accessibility world: How? 

In 1989 Accessible Media Inc. (AMI) was mandated to make published news and information more accessible to Canadians living with vision loss. Nineteen years later, the company ventured into a new medium with a similar intent – to make television more accessible to individuals who are blind or partially sighted. Thus, The Accessible Channel – which is now known as AMI-tv – was born. 

The idea is simple – use audio description to fill in any key visual elements of a program including setting, actions or non-verbal communication, like facial expressions. In Canada this is known as Described Video (DV) which, in its traditional form, is a secondary audio track with a narrator describing the aforementioned key visual elements which is then added in post production. AMI-tv is the only channel in the world to offer DV in an open format on all content. 

The benefit of traditional DV is that it can be added to any program – everything from classics like Magnum, P.I. to modern day hits like Suits, both of which air on AMI-tv. Traditional DV takes shows that were historically inaccessible and upgrades them so that individuals with vision loss can enjoy them, just like their sighted family and friends. AMI-tv often airs programs that have never been produced with DV before so although they may not be the most current programs available, many people are experiencing them in full effect for the very first time.
 
DV is an artform and requires a specialized skillset from start to finish to ensure that it doesn’t overshadow the natural story arc and creative elements of a program. To help ensure that high quality DV is consistently broadcast across Canada, AMI worked alongside industry leaders and grassroots organizations to create the Post-Production Described Video Best Practices – a set of guidelines that can be followed by all broadcasters. 

As AMI-tv evolved it became apparent that as much as traditional DV had reshaped accessibility in television, there were certain things it wasn’t suited for. As such, the team at AMI started thinking about ways in which DV could be even more inclusive. 

In addition to a full roster of programs and movies from other broadcasters, AMI-tv airs a wide variety of original programs that are produced in house or in partnership with production companies across Canada. AMI produces two weekly TV shows in house called AMI This Week and ATW Weekend Edition, plus a variety of specials and documentaries, alongside a number of co-productions including Employable Me and Eyes for the Job. 

Original productions became the perfect vehicle to implement a new form of description pioneered by the team at AMI called Integrated Described Video (IDV). IDV emphasizes accessibility throughout the production phase and incorporates natural ambient sound with descriptions from hosts and guests during filming, eliminating the need for a secondary audio track. 

IDV is an innovative approach to description that creates a more holistic television experience for everyone. AMI continues to work with production companies to train them in IDV best practices with the intent that this ground-breaking form of description will continue to gain recognition.

But sometimes, you just need to go live! Check out AMI-tv for Live Described Video, where professional narrators describe an event in real time, often weaving additional description into what’s already included to create a more vivid picture for the blind and partially sighted audience for things like Blue Jays baseball games, and the Summer and Winter Paralympic Games. 

Guest blogger: Taylor Turner is the Marketing and Communications Specialist at AMI-tv. AMI-tv seeks to entertain, inform and empower its audience with a variety of fully accessible content. Learn more at ami.ca. 
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Learning to change the world, one small action at a time

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Rick Hansen has said, “I honestly believe that my best work is in front, not behind me.” I think that his statement epitomizes the determination and drive he has put towards making our country more accessible and inclusive. One of his latest initiatives was hosting the Rick Hansen Foundation Youth Leadership Summit, a three-day event in Ottawa where 50 youth from all across the country gathered to learn about accessibility, inclusivity, and leadership in order to become the next generation of champions for change. 

During Victoria Day weekend, I was lucky enough to be one of those participants. I and 49 other youth got the incredible opportunity to participate in activities and discussions around issues of accessibility and inclusivity for people of all abilities. It’s truly an incredible thing when you can meet 49 new friends who share the same interests and goals as you do. Each of us has different backgrounds and abilities and came from different places in Canada, but we all share one common dream: an accessible and inclusive country. 

Meeting all these new people and hearing their stories, ideas, and unique perspectives was a true blessing. Seeing how each and every one of us aspired to make change in our respective communities left me believing beyond a shadow of a doubt that this dream of ours that entails an accessible and inclusive Canada is easily within our grasp. Just like Rick Hansen said, “If each one of us choose to change one small thing - together we can make a big difference.”

I believe it’s safe to say that the person I was going into the Summit as is different from who I am today. Fighting against ableism was always something I’ve been passionate about, and I had always tried my best to get the necessary information and tools to advocate for people with disabilities. However, the knowledge that the Rick Hansen Youth Leadership Summit has equipped me with certainly tops anything that I’ve learned from a book or the internet. 

I got to participate in various activities, all which provided me with facts about the prevalence of disability in our country; physical and mental barriers that one with a disability may face; and how to break down barriers and systemic ableism. 


Guest blogger Alejandra Van Dusen is 14 years old and lives in Regina, Saskatchewan. She was diagnosed with Juvenile Idiopathic Arthritis when she was 18 months old, but never let it define her or stop her from pursing her dreams. She loves sports, especially swimming, and volunteering in her community. 
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Mental health and mindfulness for people with disabilities

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Disclaimer: The information in this blog is not a substitute for a diagnosis and treatment plan by a licensed healthcare professional. If you’re struggling with mental health issues, please call a doctor in your area.

It felt hard to breathe. My heart was pounding so hard that I could hear it in my ears and feel it in my head. My muscles were tense and tight. I felt lightheaded and dizzy, almost like I would faint. My stomach turned and cramped. My chest hurt. Sweat rolled down my face. Am I having a heart attack? I thought. With each thought that raced through my mind my heart would only beat faster, harder, and I felt more out of control.

If you don’t recognize these symptoms, this is what a panic attack feels like.  You may already know a little about panic attacks, anxiety, and depression, but they are much more common than you realize. The World Health Organization cites that one in four individuals have a mental health concern. That’s a huge number of people. It’s also important to know that many people experience anxiety or depression as a stress reaction after a big life-changing event, for example, acquiring a disability of some kind. 

For people with disabilities, it’s a real struggle to manage what would seem like regular daily activities to others. My anxiety and depression began a few years after the accident that left me an incomplete quadriplegic. I started having negative feelings about driving by myself, going to the store, falling, and being looked at or judged by others.  Depression is one of the most common conditions secondary to disability and chronic illness. According to the North Carolina Office on Disability and Health, studies have shown depressive symptoms may be two to 10 times more common in individuals with disabilities or chronic illnesses. Consistent with this finding, the American Association on Health and Disability cites a number of studies that find individuals with disabilities have a higher incidence of depression and anxiety symptoms. 

Not all people with disability are going to have depression or anxiety, but some of the challenges they face put them at higher risk. We are all aware that socioeconomic status, health, pain, mobility, experiencing a trauma, and isolation are common challenges for people with disability and it is these very challenges that elevate the risk of mental health concerns. 

Mental health concerns such as anxiety and depression add an additional barrier for those with pre-existing disabilities to face. One such barrier is that mental health issues still carry a lot of stigma. “I am weak” or “It’s just in my head’ are two very common myths that prevent people from seeking help. But mental health and physical health are inextricably interconnected. “There is no health without mental health” (World Health Organization) - mental health must not be ignored or denied.  Sadly, we are our own worst enemies and we to put up barriers to taking care of ourselves along with our own mental health. 

One of the reasons I became a mental health worker is because I know the struggle that I went through after my accident. After I went through a difficult recovery process, I learned that much of what I had experienced is common to go through after a traumatic life changing incident and can be considered a normal reaction to a very abnormal set of circumstances. Armed with newfound knowledge and experience I set out to help others. 

What should I be looking for? Signs and symptoms of a mental health issue

If you’ve recently acquired a disability, or even if you’ve had one for years, watch out for the signs and symptoms below and take action right away.

  • Ongoing low mood and / or lack of enjoyment in activity in general
  • Increased irritability / anger
  • Change in sleep (either difficulty getting enough sleep or sleeping all the time)
  • Change in appetite (either difficulty eating or eating significantly more - often “comfort foods”)
  • Decrease in memory and/or concentration
  • Fatigue or decrease in energy
  • Increased worry 
  • Withdrawing from people
  • Ongoing avoidance of certain persons, places, things
  • Thoughts of suicide or death


Self-help: Coping tips and strategies
  1. Connect with others. We are social creatures. Get our and connect with family, friends, or co-workers. Going out with people and doing something you enjoy is a good way to break the cycle of self-talk and releases good “happy” chemicals.
  2. Keep busy. When you’re active, you increase your chances of experiencing something pleasurable as well as stopping the loop of negative thoughts. Pick one or two things to start that appeal to you and put it to the test. Look at your mood before doing it and then again after. We often enjoy it more than we think we will.
  3. Exercise. Start including more exercise in your life even if it’s something very small to begin with. Exercise is Mother Nature’s natural antidepressant. It has been shown to release similar chemicals to that of antidepressants and people report feeling better even if they only exercise for half an hour a few times a week. Exercise also relieves stress and can help improve sleep quality.
  4. Give back. Give to your community or good cause. Volunteer or do something purposely to help someone or some organization. We often feel good about helping others and often provides a sense of accomplishment and meaning.
  5. Try continuing education. Try and learn something new each day. Sign up for a class or a course. By learning and developing a skill or knowledge about something we feel good about ourselves.
  6. Practice mindfulness. Learn how to stay in the present moment without judgment. Try to view things with a healthy sense of openness and curiosity – yes, even unpleasant things!
  7. Acknowledge and accept things as they are.  Avoiding or trying to deny, dismiss, or not accept something that has happened takes a lot of energy and is ineffective. Only through acceptance can we come to peace with what is and move forward. You can’t map out how to get to point B if you don’t accept you are at point A.


Looking for more information? Helpful resources and information The Free Mindfulness Projectoffers free mindfulness exercises, videos, and apps
Headspace has free "Take 10" Program, a 10-minute a day meditation practice
Centre for Clinical Interventions offers information and workbooks for a variety of mental health issues


Anxiety BChas information for parents on anxiety
Mind Check has information on depression, anxiety, and substance use for teens
Guest blogger Ryan Sturgeon has a Bachelor’s degree in Science degree, a Master’s degree in Counselling Psychology, and currently works as a community mental health worker. He’s a husband, and proud father of 4 children.


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Not all blind people: One woman’s insight

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In my 29 years on the planet, it took me 23 of them to properly admit something to myself: I’m blind. It shouldn’t be a surprise but just like for sighted people, I didn’t grow up with a realistic idea of what being blind meant.

If you’re thinking, “how can she possibly not know she’s blind? You either can see or you can’t.", join me for my first point.

Not all blind people … are completely blind
It seems strange but it’s true. According to VisionAware, ‘of people who are legally blind in the US, only 15% have no light perception’. Being blind is one end of the sighted spectrum which ranges from those who have no usable vision and likely use a mobility cane or guide dog, to someone like me who makes use of what vision they have with additional aids to make things easier, to someone with 20/20 vision.

In terms of being blind, I can be invisible. I can walk down the street and no one would know that I’m blind. Blind or low vision individuals don’t always want to, or know how to, access resources or adaptive devices, so not using a cane or guide dog to get around is not uncommon. There could be blind people around you and you wouldn’t even know it! What does a blind person look like anyway?

Not all blind people … have other disabilities
My eyes don’t work properly but the rest of my body does, including my brain. You’d be surprised by the number of people who have talked to the person I’m with, or talked to me like a child and looked astounded when I reveal myself to be an educated woman.  There seems to be common misunderstanding that if you have one type of disability, you have many types of disabilities. It’s true that there are people with a variety of or multiple disabilities, health conditions or mental health issues, but that's not always the case. And my blindness only affected my education because of a lack of accessibility or teachers’ confusion over how best to accommodate me. Disability and IQ aren’t intrinsically linked. 

Not all blind people … have superpowers of hearing, smell, or anything else
I can hear where something has dropped on the floor with a great deal of accuracy. I can find my way around familiar places in the dark or with my eyes closed. I can find things in my bag by touch alone. But these aren’t super powers; they’re a set of skills I have developed to cope and compensate for a lack of sight. Fully sighted people don’t rely on these skills, you don’t need them. They aren’t magical, they're just different. 

On a much deeper level, this feels connected to a belief system surrounding people with disabilities that is worrying. I have albinism which is one of those conditions that people fear, mythologize, or both. In Tanzania and other nearby African nations, people with albinism are maimed, killed or have their bodies exhumed to be used in preparations or rituals to bring good luck. Under the Same Sun is an organization working to combat this, but many with albinism still live in fear and are often forced to stay hidden in order to survive. Changing stereotypes through discussion and education about disabilities continues to be an important way to break down these stigmas and social barriers. 

Not all blind people … ignore their appearance
Blind people care about their appearance. Not everyone, but it’s not true that because we can’t see ourselves very well (or at all) that we don’t want to take pride in our appearance. Sure, you’ll have to tell me if I have dog hair on my coat or lipstick on my teeth, but don’t be surprised if I’ve got makeup on or my outfit is well put together. 

Everyone will do what makes them happy, and for some people that means focusing on different things other than how they look, but don’t assume that just because I’m blind I don’t care. I’m willing to accidentally poke myself in the eye with a mascara wand just as much as the next woman!

Not all blind people … want to be “cured”
I don’t want to be cured. And I’m not saying that to lie to myself. There was a time when I would have given anything to be ‘normal’. I used to pray for my disability to be taken away. Which is how I can say with confidence now that I don’t want to be cured. If someone said I could wake up with full eyesight tomorrow I would more than likely say ‘no’. 

My experience of disability has shaped who I am as a person. It’s made me resilient and resourceful. It’s made me curious about the world, determined to succeed and develop a willingness to try to understand others because I know what it’s like to be misunderstood and misjudged. So don’t offer to pray for me, or tell me what your friend tried that worked, and don’t for the love of all the cat-eye glasses, tell me that you feel sorry for me. 

My life is great and blindness and learning to accept is part of that. Other people would take a cure for their blindness and I support that wholeheartedly. For me, I’ve worked hard to accept my blindness in a world of misconceptions, and I'm now a proud blind woman who's working to change those misconceptions for myself and others.

 If you're interested in more thoughts on a few myths about people who are blind you should check out the wonderful Molly Burke and her Youtube video on this topic.

Guest blogger Rachel Finlay is the Access Manager for the Rick Hansen Foundation's BC pilot of our Accessibility Certification Program.. She's a bookworm who likes knitting, tea and politics.

Categories

A conversation on disability representation and inclusion in Canadian media

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Image: (L-R): Sharon Caddy, Kevin Philipupillai, Andrika De Lanerolle, and Kelly MacDonald sit around a round table in front of microphones on a stand in a studio all wearing headphones. Everyone is smiling and looking at Kelly as he tells a story. 

In the early days, before the prevalence of screen readers on iPhones and computers, if you were blind or partially sighted, getting information in a timely fashion from print materials could be difficult. 

It’s now easier to access information than ever before, but some materials remain elusive. While accessible formats are becoming more and more prevalent, sorting through the millions upon millions of articles, essays and columns can be exhausting - not to mention, the voice of an assistive reading device isn’t exactly the easiest thing to listen to for any extended period of time. 

Accessible Media Inc. (initially launched as a reading service) has grown to offer a variety of audio and television programming for Canadians with disabilities by a talented team of on-air hosts with their own diverse abilities. Read on to find out more about AMI's audio programs, what the hosts think about disability representation in the media, and what you can do if you're interested in working in broadcasting.

AMI-audio's disability programming

AMI-audio’s reading service has grown and shifted over the years but the core of what we offer remains the same: accessible, curated print content read by professional narrators. AMI-audio airs a variety of programs dedicated to topics of interest with headlines from Canada’s top print publications. You can listen to curated reading shows like The Health Report, The Lifestyle Section, Pet World and Primetime, to name a few. We also offer shows dedicated to specific publications, like The Guardian This Week and The National Post Show- both also available to stream on demand. 

Over time, our audience told us they wanted to hear more live content and wanted to have a dialogue with us about the news and information they listened to on our channel.

In early 2016, AMI-audio launched its first ever live show, the aptly named, Live From Studio 5. Focused on news of the day, technology and information, hosts welcomed listeners to their day with all the info they needed to get started in the morning.

Soon after AMI-audio added a live afternoon show, Kelly and Company. Hosted by AMI’s larger-than-life personality Kelly MacDonald, Kelly and Company puts the spotlight on a chorus of contributors from the disability community who discuss everything from entertainment to health and lifestyle information, all through a disability lens.

Finally, AMI-audio created a space for debate, discussion and conversation around disability related topics not covered in-depth by traditional media. Open Dialogue is a program where guests, panelists and listeners gather information and discuss in-depth topics like mainstreaming, violence against people with disabilities and disability policy in North America. You can listen on demand to any of these programs and you can also stream AMI-audio live for free

A Q&A with AMI-audio hosts 

AMI-audio is a place where we not only provide information to our audience, they provide information to our community at large. And as our service grows, so does the talent that join us on air. AMI-audio is home to some of the best and brightest broadcast talent and their journey to working in media and the work they do on air is just as important as the content we provide to our listeners. 

We chatted with a few of our on-air hosts below about what it’s like working at AMI, disability representation in the media and tips on working in the industry. 



Image: A headshot of Kelly. He’s smiling and wearing a bright green shirt and grey fedora. 

Kelly MacDonald, current host of Kelly and Company on AMI-audio has worked for AMI since its inception in the early 90s. As a broadcast graduate from Fanshawe College in London, Ontario, he had always dreamed of being on-air.



Image: A headshot of Dave. He sits in front of a computer with audio equipment around him. He’s smiling and wearing a pink shirt with grey stripes. 

Dave Brown, is a presenter with AMI This Week and guest host on AMI-audio’s Live From Studio 5.  Dave started out working at a college radio station and became inspired to pursue broadcasting through different radio and television arts programs and finally working his tail off at many, many internships. 



Image: A headshot of Joeita. A microphone supported by a stand of camera floats in front of her. She is smiling and wearing a pink blouse.

Joeita Gupta hosts Live From Studio 5 with Mike Ross weekly. She also volunteered for a campus-community radio station where she hosted and later produced a weekly feminist radio show.



Image: A headshot of Michelle. She is wearing headphones and is sitting in front of a microphone in studio. She is listening to conversation and is wearing a blue shirt. 

Michelle McQuigge is a reporter with the Canadian Press and co-host of Open Dialogue. She’s always been a fierce advocate of disability rights and upon graduating journalism school landed her first gig with the Canadian Press and has been loving it ever since.

Q: How do you feel about the current representation of people with disabilities in mainstream media?

DAVE: “The representation of people with disabilities in the media is pretty limited.  You don’t see many on-air personalities with disabilities.  You are finding more and more people behind the scenes, but that hasn’t quite bled through to on-air positions.”

JOEITA: “The representation of persons with disabilities leaves a lot to be desired. On the rare occasion when they do appear in mainstream media, persons with disabilities are often represented as objects of pity; as lacking agency or voice, distilled to one-dimensional tropes.” 

Q: People are often unsure of how someone with a disability could work in media. What adaptive technology do you use working on-air? 

KELLY: “There is more comfort with disability in media but generally I think people are still afraid to hire people with disabilities in any field. Sometimes the idea of assistive technology scares hiring managers. At AMI, making the job accessible comes first.”

JOEITA: “I rely on my trusty iPhone equipped with Voiceover as well as a laptop with JAWS to research, surf the web and read scripts for the show. Also, my much loved and regrettably beaten up white mobility cane to get around.” 

DAVE: “I need big fonts to read anything on the air.  Thankfully, between my smart phone and Microsoft Word, that’s easy to navigate. Because I’m an albino and light sensitive, I typically prefer to work in dark places, so the studio experience is perfect for me.” 

Q: How is working for AMI-audio different than working for other broadcasters or media companies?

JOEITA: “This is the first time in my professional (working) life that I’ve felt that my perspective as a person with a disability has not only been validated, but is valued. Having an opportunity to speak to and for the blind and low vision community has paved the way for me to greater self-acceptance as a woman with a disability.” 

MICHELLE: “The show I co-host on AMI-audio takes a deep dive into a wide variety of disability-related issues, all examined through a lens of inclusion. I love having the scope for more thorough explorations of topics. AMI-audio wants to hear it all. I’m grateful to know that someone out there is committed to exploring all sides of a complex issue.” 

Q: What advice would you give to a young person with a disability who wants to work in media?

DAVE: “You can do anything you want to.  Your disability will not hold you back.  But remember that media is a talent driven industry, so you better be willing to work your tail off and develop your skills.  I’d give someone with a disability the same advice I give to all aspiring broadcasters, work hard, be humble, and don’t be afraid to take any professional challenge head on.” 

KELLY: “Hang in there and accept we are always going to be asked the same questions from people needing to understand how we do it! Encourage questions so you can take advantage of the opportunity to advocate and educate.  It moves all our cases forward.” 

MICHELLE: “Don’t rely on other people to advocate for you, but don’t be afraid to let them if and when appropriate. Resist the temptation to downplay your disability at every turn, since there will be times when your perspective means you’re best equipped to do justice to certain stories. Most of all, make sure you love this field. It isn’t always easy, but it’s always fascinating, challenging, and rewarding whether you’re disabled or not.” 

JOEITA: “Working in the media is a tremendous opportunity for people with disabilities because it offers an avenue to change perceptions of people with disabilities, smash some outdated stereotypes and raise awareness. Like with any other profession, there is a learning curve and obstacles to overcome: keep a positive attitude whilst remaining realistic; understand your strengths and where you need to grow; don’t be shy asking for help and when needed, advocate for yourself.”

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Visit AMI's website to find schedules on your service provider, or stream AMI-audio live.

Guest authour: Elaina Falcone is the Marketing Communications Specialist at Accessible Media Inc. (AMI). AMI is a not-for-profit multimedia organization serving more than five million Canadians who are blind, partially sighted, deaf, hard of hearing, mobility or print restricted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French,

AMI’s mission is to make accessible media for all Canadians. Follow them on YouTube, Facebook, and Twitter.

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How accessible media is helping people with disabilities connect to the world

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How do you connect with the people in your life? Maybe you text or talk on your phone, or you post on Facebook, Twitter, Instagram or Snapchat. And how do you keep up with what’s happening in the world? From downloading your favourite podcast to reading the news on your iPad to binge watching the latest Netflix series, we can access more information faster than ever before.

Our world is filled with information from the minute we wake up to the time we fall asleep, and often, media is the primary way we connect with each other. We connect with our communities through learning about what’s happening around us. But what if the media we consume is not accessible to us?

For members of the blind and low vision community, many types of media have remained elusive because they aren’t accessible. Before the internet, print – more specifically newspapers and magazines – were virtually inaccessible. It was this inaccessibility of media that lead to the creation and growth of Accessible Media Inc., an organization that serves the blind, partially sighted, deaf, hard of hearing, mobility or print-restricted community by offering accessible broadcast services for all Canadians.

How Accessible Media Inc. came to be
Accessible Media Inc. launched in 1989 as the National Broadcast Reading Service (NBRS) to provide equal access to published news and information for all Canadians with vision restrictions. NBRS later launched a radio reading service called VoicePrint, and recorded the reading of hundreds of hours of magazine and newspapers articles so Canadians could have equal access to print materials.

In 2008, the NBRS launched TacTV, the world’s first and only television network to broadcast all programs with closed captioning and described video. Then in 2010, NBRS became Accessible Media Inc., and VoicePrint and TACtv became AMI-audio and AMI-tv.

What does 'accessible media' even mean?
Accessible media refers to audiovisual media content can be used, read or viewed by people with disabilities, particularly those who are blind, vision impaired, Deaf, hearing impaired or who have a physical disability.

An example of a piece of accessible content is a video with closed captioning, described video (more below), and a transcript for Deaf and/or blind viewers.

What is described video exactly?

How do the visual elements in a television show or a movie bring a story to life? Can you remember a time where you were moved by the display of an emotion or perhaps you solved a storyline by recognizing a visual clue? Described Video (DV) is the narrated description of a program's non-verbal elements that may include setting, action, costumes, and body language. Description is added during pauses in dialogue and sound effects and enables people to form a mental picture of what is happening in the program. DV uses a separate audio track that is added after the program has been completed. DV allows people who are blind and partially sighted to fully enjoy the television, movies and other media they want to watch with their friends and families.

Here's an example of how DV can make a difference in how you interpret the information you receive from a story with sound alone:



All of AMI’s programming is available with described video, and described video options are available through other broadcasters as well. Check out the Described Video Guide for a comprehensive list of all programs across all stations in Canada available with DV. Listings are available online or by phone up to five days in advance.

What kind of accessible content can I find on AMI?
AMI-audio focuses on live programming geared towards disability issues, advocacy and inclusion. AMI-audio also still reads a curated selection of magazine and newspaper articles daily and carries a selection of disability focused programming from around the world, including several BBC programs.

AMI-tv provides dedicated coverage to events and happenings in communities across Canada with programs like AMI This Week and ATW Weekend Edition. AMI-tv also carries a selection of specialty programming focused on the blind and low vision community along with several live described events.

AMI-tv also has Embedded Described Video, or Integrated Described Video (IDV). IDV is a method of producing television content for blind and partially sighted audiences from the ground up, where the identification of key visual elements of a story are incorporated into the pre-production and production phases, so that traditional DV is not required after the program has been packaged. Many users find IDV less intrusive as an extra voice is not featured within the program itself to describe what’s going on.

AMI uses IDV in many of its original television programs including Four Senses, a cooking show with an accessibility twist. Celebrity chefs Carl Heinrich and Christine Ha cook up recipes that appeal to all the senses and offer accessibility tips in the kitchen. Chefs Carl and Christine use every opportunity to give rich description of how their delicious dishes are made. They also include helpful cooking related tips, from tactile ways to measure ingredients to placement of items around the kitchen.

Moving towards a fully accessible world
It’s not just movies and television that should be accessible. Social media is increasingly becoming the way many of us connect with the world around us. In fact, 74 percent of AMI’s community members are active Facebook users and 86 percent use YouTube to find and consume content.

Social media companies are recognizing this growing population and are slowly introducing new accessibility tools to improve user experiences.

AMI believes individuals and organizations want to do the right thing and make their social media content accessible, but many aren’t aware of the tools that are available and how quickly assistive technology is evolving. Take a look at AMI's brilliant K9-Online video that’s raising awareness about digital accessibility!



AMI has a passion to make accessible media for all Canadians. Check out its programming and let us know what you think!

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Guest authour: Elaina Falcone is the Marketing Communications Specialist at Accessible Media Inc. (AMI). AMI is a not-for-profit multimedia organization serving more than five million Canadians who are blind, partially sighted, deaf, hard of hearing, mobility or print restricted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s mission is to make accessible media for all Canadians. Follow them on YouTube, Facebook, and Twitter.


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Self-care for partner caregivers

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This post was originally published in the Spring 2016 issue of SCI BC’s Spin Magazine.

When someone sustains a spinal cord injury or other physical disability, there are supports in our healthcare system for rehabilitation. But when a partner becomes a caregiver, there are fewer resources available. Spinal Cord Injury BC (and other provincial SCI organizations') groups and activities can be a great way to find understanding and support—after all, an injury impacts a person’s family too. Here are some important ways that you can balance the roles of partner and caregiver successfully.

1. Know who your trusted supports are and get them involved as soon as possible.
Even if you don’t tell them about your daily life, a quick update every now and then will suffice. This way, if you require their assistance at some crucial point, they are not clueless.

2. Do not let others’ expectations guide you.
It’s common for people to ask questions like “Does (s)he take sugar with that?” or “Why aren’t you pushing him/her?” Over time, you will find a way to collectively respond to such remarks and be with each other in the way you both want. And certainly make it clear to whoever is asking these questions that they should be addressing your partner, not you.

3. Enjoy your sex life.
Contrary to popular belief, it doesn’t have to come to an end after SCI. There may be challenges, and it will be different. Yet intimacy post-injury is possible. Have a look at the sexual health resources on our database for ideas. Expect that people will ask you about your sex life but know that you do not have to answer.

4. Have a life aside from your partner’s life.
This shouldn’t be any different than what you did before the SCI. It’s not selfish to indulge in self-care and put yourself first at times. You are more than your partner’s caregiver, and cannot be an effective caregiver unless you take care of yourself too.

5. Be prepared to fight for your relationship.
At times, you’ll be up against those closest to you—remember that they don’t live your daily life and it may take time for them to understand why you choose to be with your partner. You may also have to remind yourself at times that your fight isn’t with your partner, but that you are fighting together against your barriers.

6. Get comfortable sharing.
You’ll need to adjust to your new life, new roles, and the presence of new people and professionals in your life. Care aides, physiotherapists, occupational therapists, doctors, nurses, and maybe even lawyers will become a part of your team in caring for your partner. They are there to help you so reach out to them when you feel the need to do so.

7. Expect to field lots of questions.
People will ask you questions out of sheer ignorance, a genuine desire to help, curiosity, and other reasons. You don’t have to answer them all—in fact, the perfect response to a rude question might just be silence, and not dignifying the question with an answer. Regardless, be prepared.

8. Stand your ground.
It is quite common to feel guilty when you’re a caregiver, especially initially. This could be amplified if you, the caregiver, are able-bodied and your partner isn’t. Don’t let your guilt taint your decision making process. Ask yourself: Would I act this way if my partner didn’t have a disability? Several online forums, like Apparelyzed, can connect you with people in the same boat. They’ve been through similar experiences and emotions, and can help support you during this process.

9. Join a support group.
Peer networking can be immensely helpful. Connect with an SCI BC peer staff member—they’ve got personal experience and can connect you with other staff and community members with whom you can relate. Also, there are support groups for caregivers facilitated by the Family Caregivers of BC all over the province. If you can’t quite find what you’re looking for, do a quick search for forums online.

10. Do not become your partner’s caregiver first—be his or her partner first.
While it is recommended that the roles of caregiver and partner be fulfilled by two different people, the reality is that most spouses do become caregivers of their partners. This is especially true in rural communities. Be mindful of your roles and prioritize them.

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Spinal Cord Injury BC provides support services for people with SCI and related disabilities, along with their families. Head to sci-bc.ca to contact their Peer Program and find out if there is a local caregiver you can connect with.


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