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.

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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

Malic, the superhero!

Words by William Shatner

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Malic was born in Dubai and was diagnosed with cerebral palsy as an infant when his parents noticed he wasn’t meeting important developmental milestones. They immediately found physiotherapy for him, and continued to maintain a similar structure for him at home, reinforcing what he was learning in his therapy sessions. Though steady, his progress was slow.

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Malic at the museum!

Malic’s parents had heard of Conductive Education® (CE), but it wasn’t offered in Dubai. After the family moved back to Canada, they signed Malic up for March of Dimes Canada’s Conductive Education Summer Camp where they learned that the sky was the limit for this bright and engaging young boy!

 

After their first assessment, the family walked away feeling hope and excitement! The great staff at March of Dimes Canada knows that it is important not only for Malic to believe that he can do anything and everything he wants to do, but that his family believes it too! Malic is continually given challenges that are outside his comfort zone, and he rises to the occasion every time! He is always quick to say “I can do it myself…”

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Those are words we LOVE to hear at March of Dimes Canada. Those words are why we do what we do.

He loves superheroes, but to me, Malic is the superhero!

Malic’s accomplishments are all 100% his own. He loves to dance, listen to music and play video games just like any other boy. He loves superheroes, but to me, Malic is the superhero! The love, compassion and determination he shows every day of his life exemplifies the March of Dimes spirit.

People like Malic are why I support March of Dimes Canada. I hope Malic’s story will inspire you as it has inspired me.

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I am also pleased to remind you that March of Dimes Canada has been accredited by Imagine Canada’s Standards Program for excellence in financial accountability and transparency, fundraising and governance. Learn more about our Conductive Education® Program by visiting the following link: http://bit.ly/ModcCEP

"Nick Jaroka" - Nick shares his #PathToRecovery story!

Nick’s Path To Recovery

Written by Nick Jaroka

I remember spending time in the rehabilitation unit at Grand River Hospital (Freeport) and evenings quiet, visitors had gone home for the day and this was a time for reflection. One reflection was “now what, what’s next” for the future.

My first exposure to March of Dimes Canada was while going through inpatient rehabilitation; there I met a Linking Survivors with Survivors (LSWS) hospital peer mentor. He had a stroke and was open to talk to me about anything. I remember not being able to speak and frustrated that the words didn’t come out but he was also a stroke survivor and immediately understood, was patient and gave me encouragement to move forward. This LSWS volunteer visited me weekly and each time we met I asked him more questions and felt the hope to keep moving forward.

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Once I transitioned back home and continued with outpatient rehabilitation, I was looking to fill some of the spare time between therapy sessions. I got into contact with the LSWS community coordinator and we met. She (was awesome, fantastic… ha ha ) was able to explain the program and we decided that volunteering as a LSWS peer mentor was a great idea.

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I volunteered 2 days a week going back to Grand River Hospital (Freeport) and visited stroke patients. This has been a great experience, every time I visited I learned something new about myself and before I knew it I was finding I could do things I wasn’t able to do before.

These opportunities enable me to continue my rehabilitation but in a ‘give back to community’ aspect – Nick Jakora

While volunteering with LSWS, I also attended the YMCA Fitness for Function program. I approached them to see if it would be possible to volunteer in their programs to encourage survivors to continue their rehabilitation. These opportunities enable me to continue my rehabilitation but in a “give back to community” aspect; some days were tiring, but it was a good tired.

Throughout this stroke recovery path, I had this thought if it would be possible to return to work. This would be a huge financial support for my family if I could even work part time. I again approached the LSWS coordinator and she was able to provide linkages including that March of Dimes Canada has an employment program specific to persons with disabilities.

Nick Jaroka
From L-R: Lisa Livingston (Employment Services Team Leader​) Nick Jaroka (Stroke Survivor), Jennifer Estabrooks (Vocational Rehabilitation Specialist​) and Barbara Moore (Community Coordinator LSWS)​

I used March of Dimes Canada assistance to navigate the systems to get the appropriate referrals and the correct paperwork. I met with a career counsellor to find out exactly what my interests are and possible employment opportunities.

Currently, I’m attending a job search workshop where I continue to learn new things about myself, and how to manage those fears of knowing I had a stroke, what if I don’t understand while on the job, what if I can’t recall, and words or my speech get jumbled? Is this goal even possible? I know that I am not alone and will continue to work on my recovery. My next step will be securing part time employment in a field of new interest and can’t wait for the next step in my path to recovery.

For more resources on Stroke Recovery, please visit our landing page for Stroke Recovery Canada®, which is a national service offering support, education and community programs for stroke survivors, caregivers and their families: http://bit.ly/ModcSRC

March of Dimes Canada, Nektarios, New Community Blog Post / "If March of Dimes Canada didn't provide Conductive Education, I don't believe I would be where I am today!"

Let’s Talk About: Nektarios!

March of Dimes Canada, Nektarios, New Community Blog Post / "If March of Dimes Canada didn't provide Conductive Education, I don't believe I would be where I am today!"

Nektarios is a proud and successful 27-year-old young man with a bright future ahead of him. But it wasn’t always that way. His family knew that he was not meeting his important developmental milestones as he struggled to sit independently as a baby. As he grew older, he was increasingly dependent on his family and friends to help him in the activities of daily living.

Now, as a proud young adult, the last thing Nektarios wants is to rely solely on others for his care and comfort. He wants — and needs — to learn how to be as independent as possible. His mother found the March of Dimes Canada’s Conductive Education® (CE) Program after hearing about it through word of mouth from friends and acquaintances. Nektarios began attending CE sessions in 2004, at the age of 15.

At the beginning, walking was difficult for Nektarios. But he set big goals for himself in CE class. He wanted to gain the strength he needed to go out with friends, enjoy the outdoors, play his favorite video games and enjoy being an active member of his community.

 

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Nektarios during one of his Conductive Education classes with CE conductor Rachel

His own determination, the skills and dedication of the March of Dimes Canada staff, and your donations have all made such a difference for Nektarios in so many ways. He was able to live independently while at college, and tackle all of the challenges of daily living with minimal assistance. Walking with one cane — a task that was all but impossible for him just a few short years ago — is now something he can do with confidence and ease.

“If March of Dimes Canada didn’t provide Conductive Education® I don’t believe I would be where I am today,” Nektarios tells us.

Increased mobility has given Nektarios the freedom he always wanted!

The evolution of this young man has been extraordinary. He enjoys life and is passionate about spreading the word about March of Dimes Canada and the life-changing programs that are available here. Every aspect of his life has changed for the better.

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Nektarios (center) with his mother, Angela, and Aron Ralston at the Ability and Beyond Dinner in 2016

Conductive Education® is one of the programs that is also partly funded through money raised from our Door-To-Door campaign. Though physical Door-To-Door is coming to an end, you can still help support CE from the comfort of your own home! Sign up as an online canvasser and share your personal page with contacts and help support Canadians with disabilities: http://www.marchofdimes.ca/doortodoor/

 

Photo of powered wheelchair with tilting seat, `March of dimes Canada', Megan, "New Community Blog Post!"

Let’s Talk About: Megan!

Photo of powered wheelchair with tilting seat, `March of dimes Canada', Megan, "New Community Blog Post!"

Megan was only 20-years-old when she was diagnosed with multiple sclerosis. Over time, the disease has progressed to the point that she has limited circulation in her legs causing severe swelling and she can no longer walk. Megan’s occupational therapist recommended a power wheelchair with a tilted seat to give her mobility and relieve the pressure on her legs. But at a total cost of $18,730, the chair was out of reach for her financially. After receiving funding from the Ministry of Health’s Assistive Devices Program and the MS Society, Megan applied to March of Dimes Canada’s Assistive Devices Program for the remaining $2,700.

March of Dimes Canada was able to fund the remaining amount to help Megan purchase the wheelchair, and she is amazed at the difference it has made. Megan has become more mobile and much more comfortable.

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Sraddha, Ryan, Jessica and Evan demonstrating tilting wheelchairs

It’s a godsend,” says Megan of her chair. “It’s very helpful. For years I’ve had massive swelling in my legs and since I’ve gotten my chair I now have knee caps and shape to my legs… I feel very blessed to have been able to access this resource.”

Megan is very grateful to all the generous donors who contributed to her power wheelchair.

Thanks to your support over the last year, we have been able to provide 282 assistive devices to 119 consumers just in the Ottawa region alone! We were able to turn every dollar donated into $5.44 worth of equipment – purchasing in total $204,231 worth of assistive devices.

You are making a difference in your community!

You can now be part of our Door-to-door campaign without having to leave the couch! Sign up as an online canvasser and use the power of the Internet to help raise money to support Canadians with disabilities: http://bit.ly/D2DOnline

 

Eva M. received much needed support from MODC's Assistive Devices Program!

Let’s Talk About: Eva M.!

Eva M. received much needed support from MODC's Assistive Devices Program!

Eva is a 61 year old female living in a retrofitted apartment in Barrie, Ontario. She has multiple sclerosis, which limits her mobility to using a power wheelchair to get around and make herself comfortable. Her previous chair was 4 years old and broken beyond repair.

Eva’s occupational therapist (OT) helped her apply to the Ministry of Health’s Assistive Devices Program, which approved 75% funding for a new power wheelchair that cost $5,427.60. This left Eva with 25% to cover. Her finances were very limited, so she knew she wouldn’t be able to afford this necessary piece of equipment. Her occupational therapist helped her apply to the Independent Living Services of Simcoe County & Area, the MS Society, and March of Dimes Canada’s Assistive Devices Program.

The Assistive Devices Program (ADP) http://bit.ly/ModcADP helps people with disabilities across the province to pay for the cost and maintenance of basic mobility devices, as well as home and bath safety equipment. ADP is one of March of Dimes Canada’s charitable programs that is supported entirely by donor dollars (including via the Door to Door campaign). Many of the people who benefit from ADP live on an income of less than $15,000.00 per year, meaning that assistive devices are often financially out of reach. At ADP, every dollar is stretched to its fullest potential so staff can provide necessary, life-changing devices to Ontarians who desperately need – but can’t afford – them.

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Eva’s November 2015 application was denied, so she continued her fundraising efforts. In January 2016 –with some funding through the MS Society behind her – March of Dimes Canada’s Assistive Devices Program was able to help out. The result: a fully funded new power wheelchair.

The power wheelchair has been ordered and Eva is very excited because her current wheelchair is unsafe – pieces are falling off and the foot component is dragging. She says that, if she has to take it out, she has difficulty negotiating ramps and is very nervous. Eva knows the new wheelchair will make her feel more secure and confident.

“This wheelchair will keep me independent and out of long-term care and just having it lifts my spirits.”

Eva is very grateful to March of Dimes Canada’s Assistive Devices Program for the support, and March of Dimes Canada is equally grateful to the donors who make it possible for us to help people in the Barrie area. Eva now has peace of mind and a safe way to get around in her apartment and her community.

ADP as mentioned, is also 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! You can also become an online canvasser at www.mymod.ca/doortodoor

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Let’s Talk About: Madison!

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Last summer, we met little Madison. In just one short year, she has opened the doors to a world of independence with hard work, and your commitment to help!

Madison’s family found March of Dimes Canada’s Conductive Education® (CE) Program after discovering that Madison wasn’t meeting her developmental milestones as a baby. Her parents worried that she would be facing a lifetime of frustration and challenges. But, because CE is one of the only programs available to very young children in Canada, it was a perfect opportunity for her to start facing those challenges with a supportive team right beside her.

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In her first CE session, she learned to sit independently! It wasn’t long before she was able to start standing on her own, and learning to walk with her walker.

Now, a full year later, Madison is a girl on the move! She’s a bright and confident child who loves learning how to jump and how to use her quad canes. She is working on stamina, core strength and balance, controlled breathing and purposeful movements of her body. She is able to figure out for herself how to change positions and stand independently. Most importantly, she has found her voice – she advocates for herself, she makes sure she is heard!

Check out this video explaining our Conductive Education Program, which also features Madison!

She swims! She plays with her friends! She rides her horse! She can conquer ANYTHING that life puts in front of her. Today, she takes charge of her world like the little fighter she is! Way to go Madison!

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!

 

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Let’s Talk About: Maida De Stein!

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Written by Tina Siegel

Maida de Stein has been canvassing for March of Dimes Canada for over 2 decades, just like her mother used to do, and she has it down to a science.

Every year, Maida gets out her lists of phone numbers and addresses, and calls ahead to ask for pledges. She keeps careful records, then only goes to the homes of people who have agreed to donate. It’s quick and efficient.

That’s one secret to Maida’s success: organization.

‘But it’s a chance to catch up sometimes, too,’ she adds. ‘I know everyone on my route. I have a personal relationship with them.’

Maida goes beyond her route, as well. She approaches relatives, friends, members of her book club and tai chi class – anyone who might be willing to donate, or who has donated in the past. This often takes her well beyond her assigned canvass.

That’s another secret: personal relationships.

Maida also gives as much as she gets. She’ll often propose an exchange – you donate this much to my charity, and I’ll donate the same amount to yours. Everyone wins.

And that’s the last secret to Maida’s success: mutual benefit.

The result: Maida is one of MODC’s most successful canvassers, raising about $1,500 every year for a total of nearly $12,000 since 2002. She’s the first to acknowledge that it’s hard work, but also that it’s worth it.

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Every dollar Maida collects goes straight towards supporting kids like Zachary (see photo), who are benefitting from MODC’s innovative Conductive Education® (CE) program. CE is designed to help people with neurological motor disorders like cerebral palsy or Parkinson’s to gain mobility and more independence. http://bit.ly/ModcCEP

‘It’s a tough job,’ she says, ‘but very rewarding.’

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!

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!

Let’s Talk About: Larry Grovum!

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Larry Grovum has been a Door-to-Door canvasser and Area Captain for five years now. In that time, he’s raised a remarkable $5,512.05 on his own. As Area Captain, Larry is also the driving force behind his entire zone – not only does he support his fellow canvassers, he also takes over many of the un-canvassed routes in his area.

As if that weren’t enough, Larry doesn’t wait for the weather to cooperate before he starts.

When you get out in bad weather, Larry explains in an email interview, ‘people read this as commitment and give more.’ But, he adds, you can’t take rejection personally. ‘Some will give, and some won’t. Thank people for their time and move on.’

Larry Govrum
Larry Grovum

Asked why he started canvassing in the first place, Larry replies: ‘I wanted to give a helping hand to people living with disabilities. I continue, because the need continues.’

In his half-decade of canvassing, Larry has enjoyed some memorable moments. One gentleman had been approached by four or five canvassers for other organizations that same day, but still gave Larry $20. Another refused to answer when Larry knocked on the door of his very expensive home. ‘But,’ as Larry observes, ‘it takes all kinds to make a world.’

The people who impress him most, he says, are the university students. ‘They’re generally poor, but they scurry around, searching for change, then apologize for not being able to give more.’

If you’re interested in volunteering as a canvasser, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!