JAIPAL - The Impact of L.I.F.E. for young adults with disabilities

The impact of L.I.F.E. – Jaipal

JAIPAL - The Impact of L.I.F.E. for young adults with disabilities

Our Learning Independence for Future Empowerment (L.I.F.E.) Program has made a difference for many of its participants. Instead of us telling you the many different ways, we thought it would be best said from the participants and parents. Over the next week, we’ll be sharing testimonials through these blog posts!

Jaipal’s mother, Satpal Dhanjal writes:

“For me this program is amazing! Oh my god! Jaipal especially is really enjoying the program. We were talking earlier as we prepared dinner and he just kept going on and on about the program.

Jaipal (left) LIFE Mississauga participants at Ribfest

Jaipal can’t wait to get going in the morning to avoid being late to the L.I.F.E. program. He gets up, washed and dressed independently to avoid being late. 

To be having this lengthy conversation with my son shows the difference the program has made. My son no longer ignores me, there is no more swearing, he treats me with respect, we have conversations, he seems genuinely interested in me and grateful for the things I do as his parent – I feel appreciated.

Events_SpikingForDimes_Toronto_Mishael Morgan_Participants_Aug-8-2016 (3)

Tomorrow I am meeting with the agency, Mike Bennett Edge, that referred us to the L.I.F.E. program and I can’t wait to discuss how far my boys have come since attending the program.

There is really so much more to say such as how independent my son has become, taking the public transit to all the events L.I.F.E. attends in our community. I have also attended a few of the community events and watched her at work and she is amazing with the participants! They try everything and do many activities. I just can’t say enough.

Thank you!”

Our goal for Giving Tuesday this year is to raise funds to expand our L.I.F.E. Pilot Program in Calgary so that it runs longer than 2 weeks. It’s the first step towards our overarching goal of bringing the L.I.F.E. Program to empower other young adults with disabilities in other communities across the country! We’ve teamed up with Eric Howk from the band, Portugal. The Man, and Savaria to spread the word. Savaria will also be matching every donation dollar for dollar until Giving Tuesday on November 28. This means your donation will be worth twice as much! Please see our crowdfunding pages below:

If you’d like to donate in CAD ($), please visit: http://bit.ly/IGGLIFE

For our international donors, please visit: http://bit.ly/MODCLIFE17

Green banner with 'Carol Agnew' written on it. Purple background with photo of Carol smiling in the middle. Green speech bubble saying "New Community Blog Post!". Text at bottom says "Carol's experience with Urban Pole Walking"

Carol Agnew’s experience with Urban Pole Walking

Green banner with 'Carol Agnew' written on it. Purple background with photo of Carol smiling in the middle. Green speech bubble saying "New Community Blog Post!". Text at bottom says "Carol's experience with Urban Pole Walking"
Written by Carol Agnew

In May 2016, I had a Lt Hemorrhagic Stroke. Prior to that, I had been quite physically active, hiking, going to yoga , working out at our local YMCA and snow shoeing in the winter. I did the Terry Fox Run every year. After my stroke, I couldn’t do any of those well loved activities.

Initially, I had in-home therapies through CCAC, to improve my speech and walking skills. In late August, my walking balance had improved and my OT (Occupational Therapist) asked if I had ever heard of Urban Pole Walking. I had several friends who had bought poles, with the intention of pole walking in the summer, so they would be ready for snow shoeing in the winter. However, they had never used them. I got the contact name from my therapist and called the contact person for our local March of Dimes Canada Urban Pole Walking Group. This also led me to Orillia’s Stroke Survivor’s and Caregiver’s Support Group.

When I commented that I was “pretty tippy” and another person said “ We’re all pretty tippy here” I didn’t feel so alone.

My friends started taking me to our local mall on Tuesday mornings for pole walking.  It was a challenging, but wonderful experience. I was able to connect with people, who were experiencing the same struggles and successes as I was. When I commented that I was “pretty tippy” and another person said “ We’re all pretty tippy here” I didn’t feel so alone. I had never met other people who had survived a stroke before and it was wonderful to talk to them over coffee, get tips and talk about shared experiences.

Carol Agnew_Collage
Carol Agnew describing her experiences with Urban Poling – (Video to come!)

The first day of pole walking was really hard. I couldn’t get my poles and my feet to work together. I certainly couldn’t walk & talk!

However, as the Tuesday mornings went by, I was able to go longer distances and soon discovered that I could pole walk while talking. I was improving my both motor skills and endurance, as well as having a social experience with other stoke survivors and my friends.

..I have gained much more. My motor skills and endurance have improved as well as my speech. I have also made several new friends. Going out weekly for a fun activity has made me feel less isolated.

My initial goal for joining the pole walking group was to improve my walking skills, my balance and my endurance for physical activities. However, I have gained much more. My motor skills and endurance have improved as well as my speech. Just as important is that I have also made several new friends. Going out weekly for a fun activity has made me feel less isolated. I have gotten new links to community resources from other survivors, as well as the wonderful volunteers and Pauline Berry from March of Dimes Canada. An unexpected bonus for me was that last weekend, I was actually able to go snow shoeing. That was something I had thought I would never enjoy again. I certainly didn’t go far- just to the fence & back, but I was out enjoying winter again with my friends. Every small success is really a huge accomplishment for a stroke survivor.

World Stroke Day October 29, 2017. Did you know that walking with ACTIVATOR Urban Poles can save lives? Get involved >

In the lead up to World Stroke Day on October 29, 2017 we’ve partnered with UrbanPoling to help promote keeping an active lifestyle through a simple but effective activity – walking! During all of October, Urban Poling will donate 10% of online ACTIVATOR™ pole sales to our Stroke Recovery Canada® (SRC) Program. Take a look at the ACTIVATOR™ poles specs & the benefits of using them: http://bit.ly/UPACTWSD17

If you’re near a participating Guardian & IDA store (http://bit.ly/MODCWSD17) & decide to buy an ACTIVATOR™ Pole in person,  donating $10 to SRC will also get you a free set of snow baskets (for your poles in Winter!).

 

Speechless, "L.I.F.E. Toronto's Thoughts on the Show!"

Speechless // L.I.F.E. Toronto Thoughts!

Speechless, "L.I.F.E. Toronto's Thoughts on the Show!"

During the last couple of sessions of our Learning Independence for Future Empowerment (L.I.F.E.) Program in Toronto, the group was introduced to a new TV show called Speechless. The show follows the DiMeo family as they go through life and the challenges associated with moving to a new town and starting at a new school.

We’re shown the experiences of every member of the family; Maya the overprotective, sometimes meddling mom, Jimmy the carefree dad, JJ the oldest son with a great sense of humor, Ray the brainiac, and Dylan the athletic daughter.

Speechless Cast
Speechless Cast

It’s heartfelt, funny, and quite realistic as many of the L.I.F.E. participants are able to recount similar experiences they’ve had throughout their lives. This show brings Cerebal Palsy into the mainstream in a big way! It also addresses a number of assumptions about disability in order to educate its viewers in a humorous way.

The reason for the title being Speechless is because the main character, JJ, has Cerebral Palsy and uses a communication device in order to speak. It begins with the family moving to a new town and finding a new aide for JJ. Throughout the episodes, there are humorous story lines that really humanize the experience of having a disability for its viewers, who may have no understanding of disability.

The L.I.F.E. Toronto group got together to think of anecdotes they’ve experienced that are similar to those shown in Speechless.

Speechless scene.

In the first episode, JJ walks into his new classroom only to be bombarded with classmates clapping and cheering for him and nominating him for Class President. Participants in the L.I.F.E. program have experienced similar reactions from people in the public when we are out on social outings, “people come up to us and congratulate us on being out and doing activities.”

In another episode, Maya calls JJ over and over again because he failed to show up for his physiotherapist. The group can empathize with JJ on this one and share their similar experiences; Marissa says that she often ignores calls when she is driving her chair because she is staying safe and attentive – whilst also recognizing that not answering her phone may cause people to worry about her.

In the first season, JJ meets Claire, an avid gymnast who is in a wheelchair while she recovers from a gymnastics injury. They become close and JJ decides to tell Claire that he has feelings for her, despite his fear of being rejected. The L.I.F.E. participants can relate to the fear of rejection; rejection from schools, sports teams, programs, and jobs. Jess told the group about her college experience. She made a few good friends throughout the program, but they stopped talking to her near the end of the school year. Jess felt like she had been taken advantage of, she felt they had been her friends to look good for the teacher. The experience caused feelings of rejection for Jess as she left college feeling as though she’d been used.

Jess and Marrisa, participants of our L.I.F.E. Program in Toronto.
Jess and Marissa

We thoroughly enjoyed the Speechless episode called HERO. This episode talks about “inspiration porn.” When Kenneth asks what that is, Ray explains, “it’s a portrayal of people with disabilities as one-dimensional things to only exist to warm the hearts and open the minds of able-bodied people.”

In this episode there is a speech competition and a student who hardly knows JJ decides to write a speech regarding how JJ is his hero.

The L.I.F.E. Toronto group has had similar experiences where people have treated them as if they are “inspirational”. Jess has had some interesting experiences where new PSWs show up at her house and talk to her as if she is a baby. Once they see her college diploma, their tone immediately changes to, “Wow, you went to college!”

Another participant had an acquaintance say to her, “my husband and I could learn some things from you. We think that we have problems and are depressed but then I look at you and realize we don’t have it so hard and shouldn’t complain.” This comment really hurt the participant.

“[inspiration porn] is a portrayal of people with disabilities as one-dimensional things to only exist to warm the hearts and open the minds of able-bodied people.”

Evan shared an experience where his PSW called the attendants at his old apartment “angels”.  L.I.F.E. Toronto staff have also had strangers approach them during outings to compliment them on what a great job they are doing. These types of compliments are quite silly, as the staff are just doing their job. Complimenting staff for no reason can also send the negative message that you assume that people with disabilities are somehow exceptionally difficult to work with.

LIFEToronto_TorontoIslandOuting_RidingFerry_Aug17-2016(5)_EvanCropped
Evan

In another Speechless episode called CHEATER, Maya and Jimmy learn that JJ has been cheating on his exams and that most of JJ’s teachers have been knowingly letting him off the hook. The L.I.F.E. group can relate to this, as some of them have had similar experiences where they forgot to pay their fare on the TTC but did not get questioned or reminded to pay by TTC drivers and fare inspectors.

The L.I.F.E. Toronto group has really enjoyed watching the first season of Speechless. The participants and staff all agree that the show has done a great job in portraying the experiences of persons with disabilities and their families, while dispelling disability-related stereotypes in an empathetic and often hilarious way. The group is eager to continue watching Speechless as soon as the next season becomes available.

Want to learn more about some of the important, fun, social, & general life skills we aim to provide young adults with disabilities who are transitioning to adulthood? Check it out here: http://bit.ly/modcLIFE

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."

Let’s Hear From: Andrea Luciani!

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."
Written by Andrea Luciani

I was born with cerebral palsy and I assumed from a young age that my parents would always do everything for me. I never thought that someday I would grow up and live an independent life, despite my disability.

But, thanks to March of Dimes’ Conductive Education® (CE) Program (http://bit.ly/ModcCEP), I have been able to turn my disabilities into abilities! I’ve been a part of the CE® Program since I was 6 years old. I am now 23 years old and the climb  hasn’t been easy. Cerebral palsy has affected all aspects of my life, including my mobility, coordination, posture, and my ability to do daily living activities independently.

Today, I like to use the word ABLE when it comes to my progress. I am able to sit down and get up independently. I am able to walk using single point canes. I am able to get from room to room on my own in my house. Every day, I focus on what I am able to do!
The CE® Program has been instrumental in my life.

Andrea Luciani screenshot

March of Dimes Canada’s CE® Program is designed specifically for people with neurological motor disorders and offers an alternative group setting approach to rehabilitation. CE® didn’t just give me tools to help my mobility; it also provided me with a voice. Instead of my parents or others speaking on my behalf, I learned to advocate for my own needs. I may need special accommodations to aid in that process but I make sure I am heard!

Thank you! Because of your generosity, and my wonderful teachers at CE®, I have grit! I have learned to never give up, keep trying, keep learning new ways to do something, and always strive to conquer! If wonderful programs like CE® did not exist due to lack of funding, many of my accomplishments would not have been possible. You have literally changed my life! I hope that CE® can continue to have a profound and lasting effect on every participant’s life.

Thank you for taking the time to read my letter.

CE® is also one of our donor funded programs, partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

Hear it from Rhys: Niagara Specialized Transit

Rhys’ take on Niagara’s Specialized Transit!

Here’s a fantastic example of an outcome influenced by public opinion and concern. It goes to show that you should always try and let your voice be heard!

Niagara Specialized Transit Users Win Reprieve of Proposed Fare Increases

Written by Rhys Evans.

Hello my name is Rhys Evans I am currently a 24 year old Niagara College student currently enrolled in the Social Service Worker program.  I am also a graduate of Niagara College’s Recreation and Leisure as well as Recreational Therapy programs. I value staying involved in my community by doing things like representing the town of Pelham on the Joint Accessibility Advisory Committee and participating in wheelchair basketball.

Rhys Evans

The Region of Niagara recently awarded BTS, a company from Vaughn, the Niagara Specialized Transit contract for transporting people with disabilities to medical appointments, school or employment.  Part of the agreement was a proposed fare increase for riders, many of who are on fixed or reduced incomes. In some instances the increases would have been as great as 300%. I got a letter in the mail along with other users to inform us of these changes.

I was unhappy with the lack of any consultation, or any transparency in how this had been done.  l was also angered by the proposed increases that would further limit people’s independence.  I firstly contacted the Mayor of Pelham, Mr. Dave Augustyn with my concerns. I also used social media, letters to the local paper and spoke to the Joint Accessibility Advisory Committee (that I am a member of), in order to urge the council to reconsider the proposed increases.

Regional Council of Niagara discussed the concerns voiced by users like myself that were presented at their June 28th meeting, and made the decision to suspend the increases, and revisit the issue in 2017.

This date was chosen because the Accessibility for Ontarians with Disabilities Act ( AODA ) will have enacted the Transportation Standard that will provide a clearer framework about what fare charges should be.  The expectation is that fares will become more affordable for Ontarians with Disabilities.

Side view of Niagara Specialized Transit bus

Whatever the outcome, it is hoped that there is full consultation with the user group before any final decision is made, because no such consultation occurred this time, and if things had remained unchallenged many users may not have been able to continue with this vital service.

In the meantime those using the system are grateful to Regional Council that they can still attend medical appointments, therapies, and school or work at a reasonable cost. As a user and member of the Joint Accessibility Advisory Committee, I shall continue to monitor the progress on this issue and make the public aware of any future developments.

 

“I’m The Lucky One”

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Bob Hallett (Great Big Sea) and Valdy have joined 13 singers from Spectra Talent Contest to record “I’m the Lucky One” – a charity single in support of March of Dimes Canada, Easter Seals Canada, and the Spectra Talent Contest (a non-profit organization that celebrates diversity in music).

“I’m the Lucky One” is a song about finding your soulmate, a rare and transformative experience.  Written from the perspective of an able-bodied person who falls madly in love with someone with a disability, this powerful love song addresses ableism and accessibility issues.


According to Ralph Hamelmann, RACA Executive Director and song co-writer, the inspiration for “I’m the Lucky One” came several years ago.  “At the time, I was a part-time Independent Living Assistant at Tobias House and had invited a couple of their Consumers to my home for a Christmas Eve gathering. When another guest found out I had invited people with disabilities, they said ‘Oh! They’re so lucky to know you!’  To this, I replied, ‘Not at all. I’m the lucky one!'”

Hamelmann adds, “From my experience, a fair number of people with disabilities experience isolation, which can lead to low self-esteem. I wanted to write a song that celebrates the beauty and authenticity I’ve witnessed firsthand in this community.”

This song is part of Spectra’s social media campaign #AllAbilitiesAreSexy, which aims to end the stigma around disabilities and is supported by Margaret Trudeau. See more about this and you can also purchase “I’m The Lucky One” here: http://thelucky1.ca/

Jamie’s thoughts on the Federal Election Forum on Accessibility and Disability

On Tuesday, September 29th, one of our L.I.F.E. Mississauga Instructors, Jamie Hutchins was able to attend the Federal Election Forum on Accessibility and Disability. Below are his thoughts on how the forum went:

“Yesterday, there was a forum concerning issues of accessibility and disability. Federal election candidates from various Toronto ridings were present to discuss their party’s platform regarding disability and accessibility.

Mike Sullivan represented the NDP, Arnold Chan. the Liberal Party and Sharon Danley, the Green Party. The conservative party was contacted, but no member volunteered to come and speak to those issues.

 

Federal Election Forum on Accessibility and Disability
A snapshot of the crowd at the forum on Accessibility and Disability
As for the discussion itself, there were several key points that I found intriguing. Primarily, all parties insisted that the largest adversary to the disability/accessibility movement is the Conservative government. Each federal representative said that the largest obstacle to adhering to the UN Convention on Rights of Persons with Disabilities has been the Conservative government.

 

All parties, except the Conservatives, have vowed to fulfill its international (and ethical) commitments. Furthermore, the NDP and Green party explicitly stated that they intend to create a national policy on accessibility and disability (Canadian Disabilities Act). Although Arnold Chan also expressed a desire to legislate such an act, he was not able to comment whether it was on the executive’s (Trudeau and his potential cabinet) agenda.

 

Secondly, I was astounded at the depth of the questions. To be clear, this discussion was specifically designed to appeal to persons with disabilities. Some of the questions designed covered topics including a Canadian Disabilities Act (CDA), physician-assisted suicide, a national housing strategy, disability representation in the HoC, adherence to the UN conventions and an increased pressure on provincial governments to administer better services.

 

Each speaker outlined his/her party’s policy concerning the aforementioned issues. Many candidates repeated old adages of “equality of service”, “reducing poverty”, “more consultation with community agencies and persons with disabilities”, “more adaptive equipment” and “an attitudinal shift”. However, both Sullivan and Danley offered more substantive policy changes should their parties be elected. Sullivan expressed his party’s commitment to enact the CDA within a year. Furthermore, the NDP is the only party to have a committee set up to constantly critique the party’s direction. The committee’s job is to meet with community agencies, listen to their advisement and consequently “hold the party’s feet to the fire”, if they alienate stakeholder rights. Alternatively, the Green Party has advocated to design a national equipment fund so that people with disabilities can exercise their right to live independently.

 

Thirdly, I was impressed by the turnout and audience participation. Peoples with disabilities were very well-represented and their questions were very specific to their disability. It was exciting to see such human agency from the group. Such a high attendance of persons with disabilities helped solidified the rights and equality rhetoric that accompanied most of the discussion. There was a wide representation of the disability community including persons who are blind, deaf, using mobility devices, having episodic disabilities, cognitive disabilities, learning disabilities, etc. This stressed upon me the importance to try to remedy the current situation regarding persons with disabilities. As a political party looking to get elected, it not only makes sense to move forward because it is proper (and moral) to have disability rights enshrined in legislation, but also because persons with disabilities represent such a large portion of the vote.

 

Lastly, Ryerson did an excellent job hosting. The adaptive devices allowed for all members of the crowd to participate. In conjunction with the captioning service provided, there were multiple people using both SLQ and ASL to communicate effectively with the deaf audience members. Student volunteers were constantly in the right place to help those with blindness find their seats. There was also one large aisle that allowed mobility devices to go back and forth. Also, I was impressed with the live tweeting of the discussion as this allowed questions to flurry in from Alberta.”

 

Why is polio still important? Polio Still Exists in 2014 #polioawarnessmonth

I developed polio in London, Ontario when I was eight years old. Years later, I started volunteering with Ontario March of Dimes, now March of Dimes Canada and have been a volunteer for over 25 years.

I became involved with March of Dimes because I was desperately looking for answer to what was causing my new pain, weakness and fatigue. My life changed when I attended a conference called “Polio: A Second Challenge” held in Toronto, Ontario, and sponsored by March of Dimes, and I learned that I had post-polio syndrome.

This inspired me to chair the Sudbury Post-Polio Support Group for 11 years. Presently I Chair Polio Canada and sit on the board of March of Dimes Canada, and Polio Health International St Louis, Missouri. I have attended Post-Polio Conferences in St. Louis, Missouri, Toronto, Vancouver, Newark, New Jersey and Warm Springs, Georgia. I participate annually in the L.I.V.E. (Leadership in Volunteer Education) conference, sponsored by March of Dimes Canada I continually advocate for better awareness of polio and how devastating it is not only to those who have the virus, but also to their families.

I want to see every child inoculated. This is important even in the western world. Polio is only a flight away. I remind all parents about the devastation of polio – and that it lasts for the rest of your life. Post-polio syndrome robs adults of their freedom. They will live with pain, new muscle weakness and unbelievable fatigue. Many survivors like me have had to return to the assistive devices, i.e. wheelchairs and braces; that we had fought so hard to throw away as children. The best way to keep the memory alive is to join our campaign, if you are a survivor, a family member or a concerned citizen get the word out about polio and WHY it is still important today!

According to the WHO, polio immunization saves 3 million lives and prevents 750,000 disabilities worldwide each year, making it ‘the single greatest public health achievement of all time.’ (CPHA – online).

In 1951, March of Dimes Canada was founded to raise funds for a vaccine to end the scourge of polio – and our advocacy continues today.

October is Polio and Post-Polio Awareness Month. We are starting a social media campaign to remind people that polio survivors are still here and living with post-polio syndrome. As a polio advocate, we hope you can help us to spread the word and use the hashtag #polioawarenessmonth

To do this, we are encouraging people (in 25 words or less) to write our hashtag and the “Polio still exists in 2014” in black marker on a whiteboard or white bristol board. If you could send a picture to March of Dimes Canada (via email at info@marchofdimes.ca) of you holding this, we can post to our social media accounts; letting people know the lifelong consequences of polio and post -polio syndrome

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Elizabeth Lounsbury, Polio Survivor and Post-Polio Syndrome awareness advocate

Follow, share and advocate with us our #polioawarnessmonth campaign on Facebook, TwitterInstagram and our YouTube channel.

Elizabeth Lounsbury.