A unique event is coming up at the National Film Board Mediatheque – we are celebrating the launch of
Tying Your Own Shoes, an animated documentary that offers an intimate glimpse into the exceptional mindsets and emotional lives of four adult artists with Down syndrome. The event includes a screening of the film, as well as a workshop opportunity with the film’s workshops facilitators and the artists. The workshops are held on Sun March 14 and March 21 at 10AM.

The event is free but there is limited space – please call to reserve a spot at 416-973-3012.

Date: January 29, 2010 For immediate release
PRIME MINISTER STEPHEN HARPER NAMES FIVE OUTSTANDING CANADIANS TO SENATE

OTTAWA – Prime Minister Stephen Harper today filled five vacancies in the Senate.

Appointed are Pierre-Hugues Boisvenu (QC), Bob Runciman (ON), Vim Kochhar (ON), Elizabeth (Beth) Marshall (NL) and Rose-May Poirier (NB). These appointments give the Government a plurality of seats in the Upper House.

Vim Kochhar is the President and founder of the Vimal Group of Companies in Toronto. Working for InterContinental Hotels and Howard Johnson Hotels, he was responsible for project management of major hotels around the world.

For the past 30 years, Mr. Kochhar has played an active role in the community by creating the Canadian Foundation for Physically Disabled Persons. Through this foundation, Mr. Kochhar has created the annual Great Valentine Galas, the Terry Fox Hall of Fame, Rolling Rampage for elite wheelchair athletes, the Canadian Helen Keller Centre, Rotary Cheshire Homes for the Deaf-Blind, and the WhyNot Marathon for the Paralympics. He has also been a friend of Easter Seals and has attended some of their meetings and events over the years. He is currently serving as Board Member for the Canadian Museum for Human Rights and as Chair of the Canadian Paralympic Foundation.

Among many other distinctions, Mr. Kochhar was chosen by India Abroad as one of the 30 most influential Canadians of Indian origin. Born in India, Mr. Kochhar received his engineering degree at the University of Texas and immigrated to Canada in 1967, becoming a Canadian citizen in 1974.

United Nations — Associated Press
Published December 2, 2009

Musician Stevie Wonder attends the NBA game between the New York Knicks and Los Angeles Lakers Staples Center on November 24, 2009 in Los Angeles. Kevork Djansezian / Getty Images

Blind pop star will focus on helping people with disabilities

The UN chief is naming blind pop star Stevie Wonder a United Nations Messenger of Peace to focus on helping people with disabilities.

United Nations spokeswoman Marie Okabe said Wonder’s designation as a UN peace envoy will be officially announced on Thursday by Secretary-General Ban Ki-moon.

She said the singer-songwriter, who has won 25 Grammy awards, is being recognized for his philanthropic work with the U.S. President’s Committee on Employment of People with Disabilities, the Children’s Diabetes Foundation and Junior Blind of America.

Wonder will be the 11th UN Messenger of Peace, joining a list of notable figures including Nobel Peace Prize winner Elie Wiesel, actor Michael Douglas, primate expert Jane Goodall and conductor Daniel Barenboim.

Source: Globe and Mail

INDEPENDENT LIVING CANADA
JOB POSTING - NATIONAL DIRECTOR

Introduction: Independent Living (IL) Canada is the national bilingual non-profit association of Independent Living (IL) Centres from across Canada. Both IL Canada and IL Centres are dedicated to promoting the Independent Living philosophy and model of service delivery. As organizations run by and for persons with disabilities, we embrace the principles of consumer-control, cross disability in nature and community based. Programs at the local level, as well as national initiatives, reflect the inclusion of our diverse populations and promote and celebrate the economic, social, culturally and political contributions that persons with disabilities make to Canadian society. Independent Living Canada promotes and supports the development of Independent Living Centres, IL programs, and provides education and leadership for its member organizations, partners, governments and communities.

Position Summary and Scope:

Reporting to the IL Canada Board of Directors, and in accordance to the guidelines set by the governance policies, the National Director is accountable for promoting and fostering the development of the Independent Living Movement across Canada including but not limited to the effective and efficient operation of the National office. In carrying out the vision, goals and objectives of the board of directors, the National Director is responsible for developing and implementing an innovative marketing, public relations, fundraising and strategic plan that will apply and encourage awareness, recognition and support of the Independent Living Movement by governments, disability and mainstream organizations, consumers, media, public/private sectors and the general public. The primary focus of the work of the National Director is to promote and foster the growth and stability of Independent Living Centres at various stages of development.

Skills Required:

•Strong understanding and passion for IL philosophy and the ability to articulate the benefits of supporting the IL movement to the public and private sectors, media, mainstream organizations and funders
•Lived and/or professional experience in the disability rights and/or Independent Living sector/community
•Ability to conduct all activities/responsibilities in fluent French and English.
•Experience working with a diverse volunteer Board of Directors
•Excellent verbal and written communications skills
•A leader with ability to manage and support diverse teams/committees in meeting goals, objectives within specific timeframes
•Minimum of 5 years of successful experience in financial planning, monitoring and budgeting
•A strong and long standing track record of fund raising with both the public and private sectors
•An entrepreneurial spirit, political savvy and the ability to develop and maintain meaningful relationships with government and non-government partners
•Ability to deal well with a broad spectrum of skill sets and expectations
•Ability to handle multiple projects with a strong knowledge base to set priorities and deliver within the budget and meet deadlines in a timely manner
•Accountable, creative and willing to take initiative and calculated risks
•A mature leader who has the ability to mentor and inspire the leadership of others in the IL Network
•Community development is an asset
•Ability to continue to build a sense of community within the association and within the disability community
•Minimum of 5 years senior management experience in marketing, communication, operations, organizational development and strategic planning
•Capacity and willingness to travel and represent Independent Living locally and nationally

If you are interested in applying for this exciting opportunity, please write and tell us about yourself in your cover letter, your applicable experience and what distinguishes you as a leader.
Please include your salary expectations in the cover letter.

Location:Ottawa
Please send resumes to
Independent Living Canada
c/o Recruiting Committee
402-214 Montreal Road
Ottawa, Ontario
K1L 8L8
Deadline: January 4, 2010 (4:00 pm)

Prefer electronic submissions to employment@ilc-vac.ca; however, hard copies are also acceptable.

Independent Living Canada is an equal opportunity employer and encourages people with disabilities to apply.

By Traci Walters

As a single mother living with a disability I anticipated some challenges moving to a new city to begin my job as National Director of Independent Living (IL) Canada. That was 16 years ago!

The transition was made more challenging by my disability – “Still’s Disease.” In plain language my immune system is overactive and confused. Instead of fighting outside invaders, it thinks that I am the enemy and is in a never-ending battle with my body. The implications are obvious, chronic pain making way for chronic fatigue, opening the gate wide for chronic depression. This is my reality. But, on the bright side, my disability has given me insight into a whole range of experiences with which many members of the IL movement deal with on a constant basis.

With my furniture, kids, dog, cat and gold fish in tow, I began my new life as the National Director.

Independent Living is as much a process as it is a goal. The IL journey encourages thousands of Canadians to feel a sense of disability pride, take more control of their lives, connect with peers, take risks, and learn through experience.

The rewards have been great. Watching friends and strangers alike, through their involvement with IL, go through a metamorphosis; newly empowered souls transforming into confident and active members of their communities.

It only makes sense that when strengthening the capacity of each individual that our communities become richer – socially, economically and culturally. This “new perspective on disability” is facilitated everyday through the IL Centres and IL Canada.

During my tenure as National Director, I have seen Independent Living Centres evolve in both urban and rural communities. I have met countless passionate, dedicated and hard working staff and volunteers supporting over 300,000 people annually through core programs, internships, volunteer opportunities, employment, educational workshops, peer support, skills development and countless other innovative initiatives. To top it off, the same staff and volunteers delivering these programs are also providing education and advice to businesses, government departments, and community stakeholders. In addition, they are constantly fundraising to ensure that the organization survives and thrives. I raise my hat to all of these dedicated contributors.

At times, it has felt like a roller coaster ride, full of unexpected twists, turns and sudden drops – swerving through good and not-so-good political and economic times. However, the unexpected, sudden and drastic drops were also part of the ride – i.e., change in the political agenda, sometimes no agenda at all, economic downturns, watching the financial plug being pulled on successful and meaningful initiatives, all a part of the ride.

There are moments where you can simply glide, and enjoy the ride – bask in successes, maybe witness a slight change or movement in a restrictive policy, but most importantly experience the strong unwavering support and sense of family in the IL Network.

Eventually, I had to accept that the “ride” itself was taking its toll on my health. I was seeing a pattern – my downward spirals were becoming more frequent and harder to get out of. Over a period of time I realized that I could no longer do this job. This was an excruciating decision because I love my work.

But, the time is right, and I have come to the conclusion that I can better serve the IL movement from the side rather than leading in the front. I will continue my involvement in those areas about which I feel the greatest passion – government relations, IL promotion, fund development and strategic partnerships. We are ushering in a new era for the right person, with the right energy and passion, to take the helm.

With that I am closing the door on a fantastic chapter of my life and moving on to the next chapter – but watch out – I am still part of the IL Movement, and always will be! And I’ll be keeping my eye open for new challenges in my new role as this next leg of the ride kicks in.

To that end, I want to thank all Independent Living Canada and IL Centre staff, volunteers, board members and volunteers who have supported me over the years. We are a phenomenal team working towards one goal – a better Canada for all! Independent Living changed my life, changed the way I view myself and view the world and for that I am forever grateful.

For those interested in applying for a rewarding and challenging position, please visit our website at
www.ilcanada.ca or www.vaCanada.ca

Published on Nov. 23, 2009
André Picard

Move follows weekend report into findings of Italian professor, who believes multiple sclerosis may be treatable with simple surgery

A new theory that multiple sclerosis is a vascular disease that could be treated with simple surgery is so “exciting” and “potentially paradigm shifting” that the MS Society of Canada is calling on scientists to research it thoroughly and promising to back their work with significant research dollars.

“This merits serious and robust studies so we’re going to issue a request for proposals,” Yves Savoie, president of the MS Society of Canada, said in an interview.

Last year, the charitable group invested $10-million on research, and Mr. Savoie said it will spend whatever is required to test the new theory thoroughly.

On Saturday, The Globe and Mail and the CTV program W5 reported on the findings of Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy.

His theory is that there is a condition, which he has dubbed chronic cerebrospinal venous insufficiency, that is the underlying cause of MS. That departs from the current thinking, which sees MS as an autoimmune condition in which the immune system attacks myelin, a fatty substance that coats nerve cells.

Dr. Zamboni found that, in about 90 per cent of people with multiple sclerosis, the veins draining blood from the brain were malformed or blocked, and this led to a buildup of iron in the brain that he theorized causes the neurological symptoms of MS.

Further, Dr. Zamboni used a simple surgical technique, angioplasty, to clear blockages in the veins of 65 patients. This has been dubbed the “liberation procedure.”

In a paper being published Tuesday in the Journal of Vascular Surgery, Dr. Zamboni reports that in the 18 months following surgery, 50 per cent of those MS patients had no attacks; in a control group that did not have surgery, the rate was 27 per cent. The number of surgery patients with brain lesions that typify MS fell to 12 per cent, compared with 50 per cent in the control group.
Until Saturday, the MS Society had been skeptical about CCSVI, saying there is “insufficient evidence to suggest this phenomenon is the cause of MS.”

Mr. Savoie insisted the group’s position has not changed, but, because of the overwhelming public response to the media stories, he wanted to stress the group’s support for research that would either prove or disprove the theory.

“We’re conscious of the potential paradigm shift this represents and
we believe every avenue merits being probed,” he said. “But our policy is to not put all our eggs in one basket.”

The head of the MS Society also pleaded with patients to not do anything drastic until the theory is tested and proven. “One of the things we really don’t want people with MS to do is to abandon their course of treatment,” Mr. Savoie said.

The W5 broadcast and the Globe story have generated an overwhelming response on MS chat groups.

Many patients are clamouring for information on how to join a study that is under way at the Buffalo Neuroimaging Analysis Center, which is recruiting in the United States and Canada, and how they can travel to Italy for surgery.

The position of the MS Society is that entering clinical trials or undergoing experimental procedures is a personal decision of patients that should be made in conjunction with their treating physician.

Ashton Embry, founder of the Direct-MS, a Calgary-based consumer group that emphasizes the importance of good nutrition for the control of MS symptoms, said in a Web posting that “CCSVI has the potential to completely change how we see MS and how to treat it.”

He predicted, however, that “it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic,” because drug companies stand to lose a lot if a surgical treatment becomes the norm.

An estimated 55,000 to 75,000 Canadians suffer from multiple sclerosis, a degenerative condition that can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis.

Source: The Globe and Mail

Published on Nov. 12, 2009
Jennifer Wilding

Once I am out of it, I will again be a visible person. But in the interim, stay out of my parking spot
Illustration by Larry Humber.

Almost three years ago, after a series of misadventures and mishaps, I ended up in a wheelchair.

It started when I stepped on a pebble and broke my ankle. The first surgery didn’t go well and I broke the same leg again. A series of operations only made the situation worse, and I will never walk normally again.

Just as I was coming to grips with this I tripped and broke my other leg. I expect to be out of the wheelchair by January.

I am more fortunate than most as this will not be a permanent feature of my life. But it has been an adventure. It more closely resembles the old Chinese curse: “May you live in interesting times.” Harry Potter has a cloak that renders him invisible. I roll around in the Chair of Invisibility.

Ontario has rules that govern accessibility for the disabled. We have dedicated parking spots, large stalls in public restrooms, sidewalk ramps and automatic doors. Lots of our buses can accommodate wheelchairs, and we have special transit services in many cities. Life is good, so being in a wheelchair should be no problem. Right?

Wrong.

The number of able-bodied people who park in those dedicated spots is legion. Worse still are the people who roost in them while they wait for someone to come out of a store. My best evil glare has no impact. It’s disheartening, as I have spent months perfecting it.

I won’t even get into the logistics of wheelchairs and buses and the nightmare of waiting for special services. Taking a taxi (if you can afford it) is just as bad. Although it’s illegal, many taxi drivers will not pick you up if you’re in a wheelchair. And taxis aren’t an option for powered chairs because they don’t fold up to go into the trunk.

If you do manage to be out and about, bathroom breaks are hideous. It’s no wonder many disabled people don’t get out much. If I manoeuvre myself into an accessible restroom, chances are good the door swings the wrong way. If it opens into the stall I can’t close it because there isn’t enough room for me, the chair and the door.

If I do get the door closed it will probably be the messiest stall. And forget personal hygiene - the number of sinks, soap dispensers and paper-towel holders that I can reach can generally be counted on the thumb of Captain Hook’s missing hand.

Many times all the other stalls will be empty and I’ll have to line up for the only one I can even hope to use. Then I get the evil glare from the able-bodied person who has been hogging the wheelchair-accessible stall. They seem to feel guilty and blame me for their guilt. Go figure.

Push-button automatic doors are my favourite obstacle. “Hunt the button” is an engrossing game, and I find them in the strangest places. Walls are good hiding places, usually ones that are so far away that the door begins to close before I can roll through. The plinths that house them can be quite decorative, something to admire while I reach for a button that is well above head level.

Getting served in a store or restaurant is another interesting challenge. Many service desks seem to be built only to serve giraffes. In my wheelchair I have to circle the desk and generally end up poking someone in the leg to get their attention. I usually can’t reach the debit machine either, and often end up asking the clerk to punch in my “secret” PIN. It makes them uncomfortable, but there isn’t another option.

There is no escaping the fact that people are acutely uncomfortable when faced with illness, injury or incapacity. They can’t help it. To alleviate the discomfort they look away and are then rendered more uncomfortable because they know this isn’t an appropriate action either.

I was in a fast-food restaurant with my teenage daughter a while ago and we went to order together. The youngster at the cash register asked my daughter what I wanted, and I spoke up on my own behalf. I paid and she handed the change to my daughter, despite my outstretched hand with wallet at the ready.

It had been a long and frustrating day and, to my shame, I took it out on the cashier. “Hello, I’m down here, and I am not broken or stupid. I’m the one with the money!” She was aghast that her behaviour had been noted, and that I had objected to it.

I call people out on their boorish behaviour when confronted by my wheelchair. I have deliberately rolled into people who try to push me out of the way, and I speak up when treated like the chair instead of the person in it.

But I must also say that throughout this ordeal I have met with enormous amounts of kindness and assistance. Given the smallest chance, the overwhelming majority of people are kind, friendly and helpful. It speaks well for the human race and I truly appreciate it.

I am lucky. Once I am out of this chair I will again be a visible person. But in the interim, stay out of my parking spot and look around when you hear my voice - I’m down here, about waist level.

Jennifer Wilding lives in Toronto.

Source: The Globe and Mail

Published On Wed Nov 18 2009
Carol Goar, Editorial Board

To help pay her way through university, Stacey Daub worked as an attendant to people with quadriplegia and other severe disabilities. She learned to act as their arms and legs, without imposing her will on them. “Giving people control and choice is deeply ingrained in me.”

She brought that attitude – plus a couple of postgraduate degrees – to her job as senior director of client services for the Toronto Central Community Care Access Centre.

It is one of 14 regional hubs in the health-care system, responsible for providing non-hospital services – ranging from post-operative rehabilitation to palliative care – to thousands of Ontarians. Children who need an attendant at school, families who need home care, patients who need medical equipment and seniors who need long-term care are served by their local community care access centre (CCAC). They are the gatekeepers of the non-institutional health-care system.

Toronto’s CCAC serves approximately 21,000 people a year. It organizes post-acute care for 18 hospitals, arranges placements in 36 nursing homes, provides home care to 16,000 clients and employs 500 health professionals.

Daub, who oversees all these services, is one of the least bureaucratic health administrators in Ontario.

She has five rules of thumb:

Do what is right for the client, not the system.

Respect clients’ choices, regardless of your views.

Don’t waste resources on services people don’t want or need.

Explain each process, as if you’d never done it before.

Above all, treat every person with dignity.

“When pressure builds, you can lose sight of the fact that everyone is a mother or a father or someone’s friend,” Daub says. “Over the last few years, I’ve had concerns about what our clients experience.”

That is why Daub volunteered to participate in a study undertaken last year by the Change Foundation, a health policy think-tank. She wanted to see her agency through clients’ eyes and bring their voices into its decision-making.

Throwing open the door had its risks. The researchers might find off-putting practices or publish embarrassing findings. But to Daub, these possibilities were outweighed by the potential benefits. The study offered a chance to learn and an incentive to make improvements.

Since it was completed, the agency has made a number of changes, some of which go far beyond the researchers’ recommendations.

One of the biggest is its “home first” policy, designed to alleviate the pressure imposed on elderly patients and their families by hospital authorities to grab the first available nursing home bed.

“The hospital is not the right place to make a life-changing decision,” Daub says. “It’s stressful. You know they want you out because you’re using a bed someone else needs. We take patients home and provide whatever services and supports they need.”

Since this policy was implemented last December, 50 per cent of seniors have found they didn’t need to go to a nursing home. They are now receiving care in their home or living in a retirement residence.

A second important change is that the agency now organizes its workload by need, not neighbourhood. Frail high-risk clients, for instance, are served by care coordinators with smaller than normal caseloads so they can stay with their patients through their hospitalization, ensure that the hand-off to their doctor is smooth, visit them regularly and provide the right mix of services as circumstances change. Other CCACs are following Toronto’s lead.

Daily routines have been adjusted. A few major reforms are in the works.

“It’s a journey and we’re only about a third of the way into it,” Daub says. “But we’ve come a long way. I think we are making a difference in the lives of our clients.”

(Note to readers: Many GTA residents live outside the boundaries of Toronto’s CCAC. North York is served by the Central CCAC; Brampton by the Central West CCAC; Etobicoke, Mississauga and Oakville by the Mississauga Halton CCAC; Scarborough, Ajax and Oshawa by the Central East CCAC).

Source: Toronto Star

PUBLIC SERVICE ANNOUNCEMENT

Nov. 4, 2009

Envisioning New Meanings of Disability and Difference
Multimedia Exhibit

A dynamic multimedia exhibit, “Envisioning New Meanings of Disability and Difference” puts forward ways of seeing disability and difference. Women with disabilities and physical differences use photography and digital stories to boldly present themselves in their own words and images.

All are welcome to attend the exhibit launch and reception on Wednesday, November 18 from 4 – 6 p.m. in the East Common Room of Hart House (7 Hart House Circle). The location is accessible and ASL interpretation will be available. Artists featured in the Envisioning exhibit will be on-hand to discuss their work.

The Envisioning exhibit is free of charge and will run from Tuesday, November 17 until Tuesday, December 1 from 7:30 a.m. until 11 p.m. in the Hart House Map Room. It is open to all members of the University of Toronto and general public.

For accessibility questions, contact Myra Lefkowitz, U of T Health and Well-being Programs and Services at myra.lefkowitz@utoronto.ca. For more information or to RSVP to the Nov. 18 launch, contact Erin Noble at erin.noble@utoronto.ca.

This exhibit is presented by University of Toronto’s Health and Well-being Programs and Services, in co-operation with Hart House and the Envisioning New Meanings Planning Committee, composed of U of T staff, faculty and students.

EVENT: Envisioning New Meanings of Disability and Difference Multimedia Exhibit

DATE:
Public launch and reception - Wednesday, November 18, 4 – 6 p.m.
Exhibit on display from November 17 until December 1.

LOCATION:
Launch – Hart House East Common Room of (7 Hart House Circle).
Exhibit – Hart House Map Room of (7 Hart House Circle).

MEDIA CONTACT:
Lanna Crucefix
HR Communications, University of Toronto
416-978-5700, lanna.crucefix@utoronto.ca.