JEDx 2017 "The Power of One" by Maayan Ziv

January 20 is the International Day of Acceptance

Osteogenesis Imperfecta Educational Film

This film from the UK's Brittle Bone Society is worth a look.

Inspiration for Innovation: How disabilities are changing big business

My trip to Indianapolis

This summer I took a road trip to the USA. The main reason was to attend a conference in Indianapolis for people living with osteogenesis imperfecta (OI), or brittle bones. It was my third conference with the Maryland-based Osteogenesis Imperfecta Foundation. 

My trip actually began in Kalamazoo, Michigan, where my parents and I spent the night before going to Chicago, Illinois. The most notable thing about Kalamazoo is that it is mentioned in a famous big band song by Glenn Miller, called “I’ve Got a Gal in Kalamazoo.” Needless to say, I did not get a gal in Kalamazoo. I did however have a good meal at Applebee’s and a restful night’s sleep at the hotel we stayed at.

The following day we drove to the north side of Chicago for a baseball game between the Cubs and the Colorado Rockies. The game was played at the historic Wrigley Field. At 100 years old this year, Wrigley is one of the last of the old ballparks still standing. I enjoyed the experience of being at Wrigley Field. It was a dream come true for me to watch a game there, and right at centre field. Wrigley is accessible as can be, despite the fact that it is old and not designed for accessibility. All visitors with disabilities require assistance getting on and off the lifts, because they cannot be operated easily.

What I liked most about Wrigley Field, aside from seeing a baseball game, was the friendly staff. They were eager to help anyone, and didn’t hesitate to greet people with a wave and a smile. The Cubs won the game 4-2.

Donald inside Wrigley Field in Chicago

Getting in and out of Chicago wasn’t as fun due to bridge congestion on the south side. It was worth seeing Chicago again for the second time in my life. The long waits in and out of the city were worth it.

Late that night we arrived in Indiana. The conference began the following day, a Friday. At the opening address, the guest speaker said Indianapolis is one of the most accessible and disability-friendly cities in America. I put that theory to the test throughout that weekend.

A few hours before the conference started, I went on one of the city’s buses operated by the IndyGo transportation service. I wanted to explore the city by venturing outside of the downtown area where our hotel was located. IndyGo requires all wheelchair users to be tied down when boarding a bus. That was the best part of going on one of their buses. The worst part of the ride was making frequent stops on a ride that should have only been 20 minutes long. I decided instead to go back to the hotel. What I discovered, however, was that some of the streets do not have sidewalks. This made crossing the road dangerous and scary. Fortunately some kind residents guided me along to the other side of the street. I arrived back to the hotel safely by bus.

I love going to OI Foundation conferences because it keeps me updated on the latest research on OI, and also gives me a chance to reconnect with other people who live with this condition. It also provides opportunities to meet new people with OI and their families. It is estimated that this year’s conference drew in 800 participants. Though most of them were from the U.S, there were other people from Canada who attended. I also learned there were visitors from England, Denmark and Norway, giving the conference some international representation.

One of the highlights for me was meeting Robby Novak, better known to the world as the Kid President. He’s a 10-year-old boy from Tennessee who posts inspirational pep talks in a series of videos on YouTube and Facebook. He is just as lively and energetic as he presents himself in his videos. When I met him, I let him know I am a fan. (Robby, along with his sister Lexi, has OI.)

Donald meets the Kid President

In-between conference events I explored some of downtown Indianapolis. This included a unique bike and pedestrian pathway at a park across from the hotel. The Indianapolis Cultural Trail is eight miles long, and promotes accessibility to people with disabilities by including the wheelchair symbol along its paths. The pathways opened to the public in May 2013. 

One of these paths leads into the White River State Park. This park includes several attractions, one of which is the National College Athletic Association (NCAA) Headquarters and Hall of Fame. We stopped in briefly to look around, but didn’t stay for any tours. It is an impressive-looking building I think most sports fanatics will enjoy.

We took in a baseball game between the Indianapolis Indians and the Toledo Mud Hens. The OI Foundation sponsored the game played at Victory Field. A bonus that evening was getting to see the visiting San Diego Chicken, the Padres’ mascot! This popular major league mascot visits several minor league ballparks during the baseball season, with Victory Field being one of his favourites. The game went into 10 innings. Fortunately the Indianapolis team won 4-3!

Does this former Indy ballplayer wear his sunglasses at night?

The conference concluded with an awards dinner and dance. The foundation also announced that the next conference will take place in Orlando in 2016. I hope I can make it to that one.

As for my informal assessment of Indianapolis as a disability-friendly city, I believe it is a welcoming and inclusive city. The people I met were all friendly and I sense that the city has applied the Americans with Disabilities Act effectively, with more improvements to come. Though it has some shortcomings, particularly with the absence of some much-needed sidewalks, Indianapolis is impressive overall. I’m glad the OI Foundation picked it as the site for its 2014 conference.

My experience with the WESP employment program

In April 2014, I was depressed. It had been more than a year since I had been employed. Seeking employment is often twice as hard if you’re a person with a disability. Fortunately, there is a program that has helped me get back on track.
 
The Workshop Essential Skills Partnership (WESP) program is an initiative of the Canadian Council of Rehabilitation and Work (CCRW). Held at the Canadian National Institute for the Bind (CNIB) in Toronto, WESP is for people with various physical disabilities who are either struggling to find work again, or are looking for the first time. I had heard of WESP through a friend who had gone through it about five years ago.
 
I had been accepted into WESP four years ago, but dropped out due to coming down with a sudden illness. When I recovered, I managed to find employment again on my own for a while. At the beginning of this year, I looked at WESP again, hoping it would help me rebuild my sagging self-confidence, and give me a fresh perspective on the types of careers and jobs I should be pursuing.
 
My professional background includes the journalism field, as well as office positions involving data entry, information and referral and webdesign. My main goal in WESP was to find a position that would complement one or more of my varied skills sets and talents.
 
In March 2014, I was re-admitted to WESP the same day I had my intake interview. It was one of the happiest days of my adult life. My program began in April, for four weeks. In those four weeks, I learned (or re-learned) how to write effective resumes and cover letters that conform to today’s expectations from working professionals. I was also enlightened on preparing interviews and doing mock interviews, networking, labour market trends, and got tips on how to stay motivated in the job search.
 
One of my favourite activities during my time at WESP was doing an informational interview. I did my assignment with an acquaintance who works as a social media specialist for an organization that provides rehabilitation services for children with and without disabilities. During my visit with him, he told me that having something that stands out will often get you a job. For him, it was podcasting, writing a book and hosting an online support group for people who stutter. He also said that, if possible, taking courses to upgrade and advance your skills and knowledge (in a relevant area) will help your professional development.
 
There were a total of 12 job seekers in the group I was in.Two of them were lucky to find employment before the program ended. When we started I didn’t know any of the other job-seekers. Since then we have managed to keep in touch and update each other on our respective journeys. The three main workshop facilitators were always kind and helpful, and made themselves available for questions and one-on-one consultations.
 
I learned a lot in my four weeks as a WESP participant. Here are some important pieces of wisdom that can help anybody regardless of where they are in their journey:
 
- Believe in yourself
- Never give up
- Make realistic goals, but anticipate changes, and be open to them
- Don't take rejection personally (I'm still working on that one)
- Don't be scared of the future, because you don't know what it will bring!
- The past is in the past--let it go!
- Keep in touch with your references periodically
 
Since my WESP term ended, I have managed to find employment again. I worked as an Information Officer for the Ontario election, and also for a federal by-election under Elections Canada. At the end of July, Toronto Staffing Solutions hired me as a part-time data entry clerk, where I still work today. I also have work lined up as an Information Officer for the upcoming Toronto municipal election. Things are looking up! Meanwhile I still look for other opportunities, and keep in touch with the WESP staff, including their job developer.
 
WESP is a worthwhile program for any job-seeker with a disability. Though WESP does not guarantee employment by the end of the program, it does empower people to keep active and informed in the job-hunting process.
 
To learn more about WESP, you can contact them directly at 416-486-2500 x8605 or aparusis@ccrw.org.

Mark Wafer: Enabling the Disabled

Ontario's Lieutenant Governor responds to CBC story on hiring people with disabilities

The economic benefits of hiring disabled employees

This CBC news story is a must-watch.

Intro to Accessible Curling

Three months ago, I wrote about how wheelchair soccer is becoming a popular sport. Wheelchair curling may not be far behind, at least in Canada. Unlike with wheelchair soccer, there are several wheelchair curling clubs throughout Canada. Presently there are clubs and organizations in Ontario, Alberta, British Columbia, Manitoba, Newfoundland & Labrador, Nova Scotia, Quebec and Saskatchewan.

Wheelchair curling has its roots in Europe, where it was first played in the 1990s. The World Curling Federation (WCF) held its first wheelchair curling event in Switzerland in 2002. In 2006, wheelchair curling was formally recognized as a Paralympic event in time for the Paralympic Winter Games held in Torino, Italy. Today, wheelchair curling is played by athletes in more than 20 countries.

What distinguishes wheelchair curling from standard curling is that there is no sweeping (i.e. no brushes are used to help the rock slide further), curlers throw from their chair with a “throwing stick,” and team members position their chairs behind the thrower to keep the chair from sliding backwards.

The Ontario Curling Association (OCA) is a member of the Canadian Curling Association (CCA), which in turn belongs to the WCF. In Toronto, games are played from October to March at the Cricket, Skating and Curling Club. In lieu of a playoff period at the end of the season, a Bonspiel tournament takes place in Toronto every January. Other clubs throughout the province come to compete, with an awards banquet at the end.

The most recent Canadian Wheelchair Curling Championship for curlers with disabilities was played in Ottawa in March 2013. Some of the players from these Provincial Championship teams have competed at both the national and international levels.

Wheelchair curling was initially played mainly by paraplegics in manual wheelchairs, but now people with various physical disabilities using power wheelchairs or scooters are known to play. This includes Douglas Gebhart, who has cerebral palsy.

Gebhart has played wheelchair curling in the Toronto club since 2010. His interest in curling began as a child, when he watched the likes of Sandra Schmirler and Glenn Howard.

“My friend (Ian) invited me to play, knowing that I liked curling,” he says. “I played before the (2009-10) season ended, and I found l liked it. I immediately signed up the following season,” he says.

Gebhart also says he wanted to find a sport that didn’t involve a lot of physical contact. “When I was 12 years old, I injured my eye when someone threw a basketball at it during a wheelchair basketball game.”

His eye healed up, but he quit playing basketball and vowed to find a sport that was safer. “I promised that as an adult I would find a sport where I wouldn’t get easily hurt. Once I started getting into wheelchair curling, I have never looked back.”

When I went to a curling session recently at the Toronto Cricket, Skating and Curling Club, I was in awe over how the people played with their chairs on the ice. I also discovered you don’t have to have a lot of upper body strength to play. During a break in a game, I threw a few rocks, and they were all good attempts. Attending the curling rink helped me to better appreciate curling as a sport.

An important message to journalists

My thoughts on the changes to Disney's park policies

Last October, Disneyland and Walt Disney World made major changes to their park policies in regards to servicing visitors with disabilities. I've been asked to give my thoughts on this situation since I happen to be a person with a physical disability. To this day I'm not sure I'm the most informed person to comment on this confusing situation. I can only go by the two days I spent at the original Disneyland Resort in Anaheim, California earlier this month.

First I will explain what brought about these changes. They resulted from some people with disabilities, allegedly, who hired wealthy people to abuse the privilege of jumping past the line-ups for the rides. (I say 'allegedly' because some of these people may not have been legitimately disabled, but I can't make these judgments since I wasn't there.)

When I got there two weeks ago, I did not experience any ill treatment from park staff. The only thing that made me squirm was getting photographed by a staff member when my parents and I were entering the Disney California Adventure park. Taking photos of guests is standard procedure for everybody, and I think it has to do with matters of security.

The Disney parks and resorts in California, Florida and France, based on my personal (and limited) observations, have treated me well. It's true I'm no longer allowed to skip through the lines, as a result of these changes, but I'm okay with that. I want to be treated as an equal everywhere I go.

I didn't go on many rides during my second-ever visit to Disneyland, but let's face it, I'm older than I was the first time and am not the same physically as I was in my younger days.

Some attractions do not require people to transfer out of their wheelchairs due to the availability of modified carts. This includes It's a Small World, my all-time favourite. That was the first attraction we went to in the original Disneyland park during our second full day in Anaheim.

One criticism I have are the high ticket prices. They keep going up every year. I agree with people who aren't planning to go on rides ought to be charged a smaller ticket price. It's a complicated issue, and I don't have all the answers or solutions. Most theme parks do not offer much price flexibility, so this is seen as another standard practice.

Chances are I will not be visiting Disneyland again in the near future. It's not due to any feelings of animosity or resentment. It is a matter of personal economics. In the event I have a family of my own (and a better personal income), I will find a way to return.

I loved being at Disneyland again, and I have no regrets about going back.

Power wheelchair soccer: the most prominent sport?

When I was younger, in the days before I took up power hockey, I briefly played power wheelchair soccer at my school, Sunny View. I remember playing it during gym class and occasionally over the lunch hour. I didn’t pursue it further because I found playing power hockey more enjoyable.
However, this sport has caught on in many circles internationally, and I am amazed to see its growth in the years since graduating from Sunny View.

Power wheelchair soccer is played with an average of four players per team on the floor (unlike in standard soccer where there are 11 players per team on the field). There are coaches and officials like in standard soccer games. All players have bumpers attached to their footrests, which act as footrest protectors. Bumpers also make it easier to ‘kick’ the ball. When I played I only used my plates and wheels to kick the ball. The ball itself is the size of a regular soccer ball.

Wheelchair soccer is a variation of association football. The wheelchair can be motorized (i.e. power chair) or manual, however you can’t have both types on the floor at the same time. Both power and manual wheelchair soccer is played in organized leagues in the USA.

In Canada, the sport has caught on in British Columbia and Quebec. There is one acquaintance of mine in Vancouver who has played power soccer for about six years. He tells me there are teams throughout BC who play competitively as members of the BC Power Soccer Association. To my knowledge, there presently aren’t any wheelchair soccer leagues in the province of Ontario.

Internationally, power chair soccer is played in the United Kingdom, France, Ireland, Japan, Portugal, Switzerland and Australia. International rules have been laid out by the FIPFA (Federation Internationale de Powerchair Football Association), based in France, where the sport was introduced in 1978. According to the FIPFA, the concept of ‘power soccer’ was introduced in Canada in 1979.

I have read from more than one source that power chair soccer is the most prominent of all power chair sports. If this is true, how come it hasn’t caught on in Ontario, Canada’s most populated province?

The Canadian Electric Wheelchair Hockey Association (CEWHA) used to have a Vancouver Island division (I remember when it formed), but it folded a few years ago, partly due to the growth of power soccer.

I’m hoping this blog will stimulate interest and dialogue, especially for readers in Ontario. Power chair soccer can yield the same recreational and social benefits as power hockey (and other wheelchair sports for that matter). Perhaps attempting the sport at a school gym or local fitness facility could generate more interest in developing an organized league. The more sports there are for those of us with disabilities, the better.

Hockey remembrances

My earliest memory of playing hockey was while I was a 13-year-old student at Sunny View Public School. My mom was afraid I would get hurt easily because of my brittle bones. I respected her concerns, and I understood the risks involved. However it did not kill my desire to play. Most of the people in my circle of friends did not object to me playing. I attempted other sports, like T-ball (a variation on baseball), volleyball and soccer. But the only sport I truly excelled at was hockey.

One of my favourite moments in wheelchair hockey came during my graduating year in 1988, when my team and I won the school’s league championship. It validated for me that I was accepted by my hockey peers, and could blend in well in the sport. The championship win boosted my confidence in staying active in the sport.

 A year before I graduated from Sunny View, I joined the Canadian Electric Wheelchair Hockey Association. They met 1-2 times a week at the old Bloorview building. It was fun joining some of my schoolmates in this league, and also getting to meet other players from throughout Toronto, and sometimes from other parts of Ontario as well.

During the 2004-05 season, I wanted to give back to the league by coaching in their junior division. The average ages of the players in this league ranged between the ages of 10 to 17. When I was invited by the coordinator to coach a team, I took on the challenge despite the fact I had no previous coaching experience. The kids and I clicked immediately, and they always expressed appreciation and gratitude every time my assistant coach and I encouraged them to shoot the ball high and not give up.

One player in particular told me years later that my coaching helped his game and gave him the confidence to advance into the post-teen level. His name is Brandon, and he continues to play as a defenseman in the Toronto Power Wheelchair Hockey League.

Five years ago, in 2008, I left the CEWHA to join the TPWHL. All the seasons I played in this league were good. The one I cherish most was the year my second team came back from personal losses to win the 2010-11 championship. Perhaps it was settling into adulthood that made it work while still possessing the spirit of childhood. Whatever it was, it was a solid foundation that carried us through our three seasons together. The mutual respect and camaraderie that existed between us certainly helped.

Throughout my time playing wheelchair hockey, I was either a forward or a defenseman. Nothing gave me a greater thrill than being able to prevent the opposing team from scoring. Scoring the occasional goal felt even better. There was even a game I recall where I played as a defense, forward and goalie! We won that game!

One of the major skills I developed as a player was being a team player. Being a team player doesn’t just involve showing up on time and playing alongside your teammates. More importantly, it involves being an active listener and observer. These skills I have transferred on to other areas of my life, including places of employment.

My years in hockey also improved and expanded my social life. Hockey to me isn’t just about playing the game. It’s also about having fun and breaking out of the isolation many people with disabilities experience.

I’ve played with many people, at Sunny View, the CEWHA and later in the TPWHL. Some are still active in the sport, and some are not. I value all the personal and professional relationships that have resulted from my participation in wheelchair hockey, past and present.

Whether I am playing hockey or taking part in some other recreational activity, I hope I will always stay connected to the community born out of my years playing and coaching wheelchair power hockey.

The Unbreakable Wyse Family

The family who motivated and inspired me to write a blog about them at the end of last year has now received coverage in this week's issue of People magazine!

Keith and Cheryl Wyse, founders of Agape Family Life House, adopted four girls from China who were born with brittle bones (i.e. osteogenesis imperfecta). The People article shows how these four bright and happy children possess unbreakable spirits, and have also lifted the spirits of everyone around them.

I met them all in July 2012, and I have maintained some contact with Keith since then. 
The family's story moved me so much I go so far as to declare Keith and Cheryl living saints. They rescued these children and have provided them with unconditional love and a higher quality of life.

Here is a sample of their People profile. I bought the magazine today (it has Katie Couric on the cover). The expanded version has more details about the family and extra photos of the kids. It's a very inspiring read. I recommend picking up a copy before they're all gone.

Getting involved with the Equal Grounds Training Project and the EyeWriter Demo

On Saturday, July 6, I took part in a pilot project and a product demonstration with a group of people at Ryerson University. Most of the participants, including myself, are tech-savvy and also seeking greater access to employment.

Terrence Ho, a business analyst with Bombardier Aerospace, started the Equal Grounds Training Project in response to the lack of employment opportunities offered to me and others living with disabilities. His passion to help others has largely stemmed from volunteering at a young age.

The day’s workshop began with some getting-to-know-you exercises, followed by role-playing and one-on-one discussions on personal skills and interests transferable to a professional environment.

After the workshop, we all took turns testing a demo of the EyeWriter. This is an eye-tracking computer program for people who are paralyzed or have difficulty using a mouse or keyboard. The software program was originally created for graffiti artist Tony ‘TEMPT’ Quan, who lives with ALS (aka Lou Gehrig’s disease). EyeWriter uses inexpensive cameras and vision software to track a person’s eye movements. The latest version of EyeWriter (3.0) continues to be in the early trial stages.

The day concluded with a dinner and a discussion on the next steps for the Equal Grounds Training Project. A follow-up workshop is planned for August 10 and 11.

Long-term goals are for us to host and take part in a TEDx conference next year, and to further develop the EyeWriter or other assistive-related technology.

Thank you Ray Cohen

Last Sunday (March 24) I was shocked and saddened to read the death of Raymond Cohen. He was the founder and CEO of the Canadian Abilities Foundation (CAF), the Abilities Arts Festival, and the publisher of Abilities magazine. He died of a sudden, undisclosed illness at the age of 64.

Cohen provided me with some of my earliest experiences writing and editing in a professional setting. I first met him during the summer of 1994, when I did a volunteer internship with Abilities magazine. It was while volunteering that summer that he published a short travel piece for the issue I helped prepare. I also assisted with updating the database and editing other submissions for the magazine. This led to other articles and volunteer opportunities with Abilities.

Cohen was also a regular presence at People in Motion, an annual exhibition showcasing products and services for people with disabilities held every June in Toronto. We usually spotted each other and say hi. In fact, he made a point of saying hello to every person he met.

It is through these experiences that I gained professional writing experience, and hands-on knowledge about the publishing industry. We even had at least one conversation on how to develop professionally, which I found extremely beneficial.

Another thing we had in common is that we both received the Diamond Jubilee Medal last February. Unfortunately we didn't cross paths during the gala. It would have been good to celebrate and share some of the evening with him.

Cohen was always friendly and hospitable, and deeply passionate about affirming the needs and rights of people with disabilities. This is what I will remember most about him. His support and admiration for the disability community is greatly remembered and missed.

Thank you Ray. You will never be forgotten.

My favourite moment of 2012

Me with Rebeka, Lydia and Rachelle Wyse
(Esther not pictured)

Before 2012 draws to a close, I want to share my favourite moment of the year with you. It happened in Washington last July, during the American conference for people with my physical disability, osteogenesis imperfecta (brittle bones).

While I was enjoying a Saturday night party at the hotel, I came upon these young pretty girls with OI enjoying cake with a middle-aged couple. When I asked the couple how they all knew each other, they said they were with four of their children adopted from China.

Originally from Illinois, Keith and Cheryl Wyse have lived more than 10 years of their lives in China. They became passionate about establishing a home for orphaned children with OI after adopting twins Rebekah and Rachelle in 2002. I met the twins, and also two of their other adopted daughters, Lydia and Esther. The Wyses have eight children, and of the six adoptees, four of them have OI.

When I met with them again during breakfast the next morning, they talked about a centre they co-founded in China called the Agape Family Life House. The Agape Family Life House is also a Christian ministry that reflects the deep faith shared by the Wyse family. The Wyses want to shine a light to the world by showing that people with OI can be brought up to live long and healthy lives.

The OI Foundation honoured Keith that evening with an award recognizing his efforts to help improve the quality of life for children and youth with OI. After the conference ended, I read more about Agape and the work it has done and continues to do. Though I live in Canada, I want to help the ministry grow any way possible.

The Wyses’ story moved me so much that I seized every opportunity I could to spend time with them and get to know them. Meeting Keith and Cheryl and their four children, and learning about the Agape Family Life House, ranks as my favourite moment of 2012.