A front pack takes Louise where she wants to go

By Louise Kinross

Louise Sertsis never saw herself as an entrepreneur. But that was before she was diagnosed with multiple sclerosis, and began using a wheelchair.

It bothered her that to carry a purse or bag she had to hang it on the back of her wheelchair, out of sight, and ask her husband—or a friend or stranger—to pass it to her.

“I felt very dependent on others,” says the Whitby, Ont. resident. “It gave me the idea of redesigning a knapsack that attaches to the front of the user, to promote independence and safety and the feeling that I can do this myself.”

For the last couple of years, Louise has developed prototypes of what she calls the Handi Pac, which is two bags in one, separated by magnets. She started a business, called Advanced Freedom. Next month, she's launching a Kickstarter campaign to fund production of the first 300 bags.

One part of the Handi Pac sits on your lap and is attached with a waistband secured behind your back with magnets, Louise says. “You’d put anything you’d normally carry in a purse on a daily basis in it”—like a wallet, keys, tablet, phone and sunglasses. “It’s attached to you, so there’s no concern about the bag falling off when you go over a bump. That’s what used to happen, when I placed my purse on my lap. And because the bag is attached, someone can’t take it from you.”

The second part is worn from your knee to the top of your foot. It carries 15 lbs—the equivalent of a carry-on bag at the airport—and is the largest wheelchair bag on the market, Louise says. It attaches to the users’ calves with a magnetic system. “It’s great if you’re travelling, or going to school or going to the gym.” 

The pack is made of water-resistant, durable cordura nylon. The large bag sits on your feet, so if carrying a heavy load, you may need to take a break.

Louise says she knew nothing about business—she studied science and psychology at school. “I had to learn everything from the ground up. I’m a sole proprietor.”

Online, she made a chance contact with a manufacturer of traditional backpacks that are sold in stores like MEC. “When I told him about my idea, he thought it was amazing,” she says. “I was missing the business side, and he mentored me. He’s made all of my prototypes.” 

The current design is sized for an adult, but Louise says a child-sized version is in the future.

Louise says the first time she tried a prototype she “jumped for joy. I was ecstatic because it worked so well for me that I knew it could help a lot of people. It was so gratifying to see my solution in physical form.”

Louise plans to sell her bags internationally, and finds herself on social media at all times of the day and night, answering questions from prospective customers. 

Check out this video of Louise demonstrating how to use the Handi Pac. You can find more information on her website, or follow her on Facebook.

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Designs make wheelchairs a work of art

By Louise Kinross

Izzy Wheels is a business that sells designer spoke guards created by Irish sisters Ailbhe and Izzy Keane. Izzy uses a wheelchair. Growing up, she loved her wheels, but it bothered her that they didn’t reflect her personality and style. When Ailbhe was at design school, she was tasked with creating something to enhance the lives of people of people with disabilities. She and Izzy brainstormed, and came up with art-decorated spoke guards. After Ailbhe graduated, the women created a business. Ailbhe works at Izzy Wheels full time, while Izzy balances her university studies with part-time work there. BLOOM interviewed them both by e-mail.

BLOOM: What bothered you about wheelchair design in the past?

Izzy Keane: The thing that bothered me before Izzy Wheels was that it was really difficult for me to visually portray to the world the positive relationship I have with my wheelchair. Until I put on my first pair of customizable spoke guards, my wheelchair looked like a lump of metal made in a hospital. To me it has always been so much more than that. I’ve always wanted the opportunity to make my chair look nice, as a sign of respect to it. Now at first glance people know that I love my wheelchair.

BLOOM: Do spoke guards have a function?

Izzy Keane: Spoke guards protect the wheels of a wheelchair from being damaged and now, thanks to Izzy Wheels, they act as a means to enhance a wheelchair user’s outfit.

BLOOM: How did Ailbhe come up with the idea of creating stylish spoke guards in her art program?

Ailbhe Keane: My sister Isabel has been in a wheelchair all her life and growing up it really frustrated her that she didn't have a way of customizing it. When I was in my final year in the National College of Art and Design, I was offered the opportunity to undertake a self-directed project to 'Enhance the lives of people living with a long term, lifestyle related health condition.’ As soon as I came across it, I knew that it was the perfect opportunity to incorporate my knowledge of my sister’s disability into my work and Izzy Wheels was born! After I graduated from college I decided to turn my project into a business.

BLOOM: What are the spoke guards made of and how is the design put on? Are they for kid and adult chairs?

Ailbhe Keane: The spoke guards are made from plastic with very high quality finishing so that they are very easy to wipe down and clean. They have velcro straps at the back to fasten the spoke guards to the wheels of the wheelchair. Yes, the product comes in three different sizes to cater to children, teenagers and adults.

BLOOM: How do you find artists to design them?

Ailbhe Keane: As a graphic designer myself I have a lot of friends and valuable contacts in the art world. I spend time looking through artists’ previous work to see if I feel that it fits in with the style and ethos of Izzy Wheels. We also get messages from designers all over the world who have seen our work and want to be part of our upcoming collections.

BLOOM: What is the range of cost? Do you ship internationally?

Ailbhe Keane: Yes we ship internationally. The spoke guards come as a pair, one for each wheel and cost between €119 (CDN$180) and €139 (CDN$211).

BLOOM: What is your best-selling design? Does Izzy have a personal favourite?

Izzy Keane: All of our designs are extremely popular. Currently our best seller is the rainbow mandala. Personally, I don’t have a favourite design, as each of the sets coordinates with a different outfit from my extremely colourful wardrobe!

BLOOM: How do you feel differently when you’re out wearing these spoke guards?

Izzy Keane: The spoke guards make me feel extremely confident because when I meet new people my cool wheels are a great conversation starter.

BLOOM: Does the public have a different reaction to your wheelchair when you have the designs on?

Izzy Keane: Definitely. Having my Izzy Wheels on is like telling people that they don’t have to be afraid to acknowledge my disability. It diminishes any potential awkwardness that another person who is inquisitive about my disability may feel. People now are more at ease when asking questions about my disability.

BLOOM: Is Izzy Wheels a business? I noticed it said you donate to charity.

Ailbhe Keane: Izzy Wheels is a business as well as a social enterprise. We give donations from all of our sales to disability charities around Ireland. The proceeds from our ‘Roll Models Collection' are donated to the Irish Wheelchair Association.

BLOOM: What are your plans for the future? Do you both work at Izzy Wheels full-time?

Ailbhe Keane: We are creating a global fashion brand for wheelchair users. Our plan is to expand our business worldwide. We already have a lot of exciting surprises being launched in the near future. I work in the business full time and Izzy works in the business part time. She is also in university studying sociology and politics, French and law.

BLOOM: Why are so many disability-related products ugly?

Izzy Keane: I think the reason why so many disability products are ugly is because when they’re being designed all of the energy is put into their functionality and their aesthetic is forgotten.

Izzy and Ailbhe won first place in the 2017 Accenture Leaders of Tomorrow awards.

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Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

BLOOM: If you could change one thing in the health-care system, what would it be?

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

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These cool costumes are for kids on wheels

Occupational therapy student Chantal D’Souza wanted to create costumes that work with wheelchairs for inpatients at Holland Bloorview. “I know kids in wheelchairs often get asked: ‘What happened?’ or ‘What’s wrong with you?’ says the University of Toronto student. “I wanted to change that to: ‘Tell me about your costume?’ or ‘How did you make that?’

Chantal volunteered with artists Lynn Simmons and Marek Wojcik in Holland Bloorview’s Centre for the Arts to run a four night costume-making course.

“Don’t worry so much about whether the costume is something that’s Pinterest-worthy,” Chantal advises parents. “The process of creating it themselves is engaging and fun for kids and makes a memory.”

Here are her tips:

• Let your child come up with the idea of what to be.
• Make the structure of the costume from cardboard (your local grocery probably has spare boxes). Stabilize the structure with light PVC tubing from a building store. PVC works great because it bends. For example, one child made a mermaid tail out of PVC tubing that was sawed into circles to create the frame and then covered in fabric.
• Paint the cardboard structure with acrylic paint from the craft store, or cover it in fabric. Go to your fabric store and look for samples.
• One child cut feathers out of cardboard, then painted them in blues and greens and attached them with wire to her larger peacock costume. You can get really cool metallic paint too.
• Use zip ties to attach your costume to your child’s chair without damaging it.
• A glue gun is great for sticking pieces of the costume—like ears—on.
• Think about how you can adapt activities so your child can participate. For example, instead of you cutting the fabric, hold the fabric so that your child can cut it.

“Throughout the process there is a lot of taking the costume and putting it on the wheelchair and then taking it off to make sure you know where to secure it.”

This piece in parents.com walks you through how to make 17 wheelchair costumes.

By Louise Kinross

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Tommy Hilfiger launches adapted children's clothing

By Louise Kinross

Great news for parents.

Runway of Dreams has partnered with Tommy Hilfiger to produce the first mainstream line of clothing with adaptations for youth with disabilities built in.

The clothing, for children up to size 20, can be ordered online and includes a pair of US$39.50 boy's jeans with these alterations: adjustable waistband; magnet system and velcro on fly, instead of zipper for easy open and close; modified fly that looks like typical fly; and loop button system inside hem to adjust length.

A boy's button-down shirt is opened and closed with concealed magnets in the front and on the cuffs that remove the need for fiddly buttoning.

Girls' t-shirts and dresses have a centre-opening at the back that uses magnets for easy access.

Go to Runway of Dreams to watch their video about how the line came to be.

Photo by Richard Cormin

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In Lucy Jones' hands, disability and style are a perfect fit

By Louise Kinross

Lucy Jones, 24, is described as one of the world’s brightest entrepreneurs by Forbes Magazine. Forbes named her to its 2016 30 Under 30 list for her work designing clothes for people who use wheelchairs: "Her modular pieces incorporate features like added fabric on kneecaps and elbows, zippers that run the length of the arm, and snaps and magnets that make dressing easier," Forbes says.

Lucy, originally from Wales, now works in New York City for designer Eileen Fisher and Runway of Dreams, a not-for-profit that's pushing mainstream labels to produce adapted versions of clothes for kids with disabilities. You may remember our story on designer Mindy Scheier, the mom who founded Runway of Dreams when her son Oliver couldn’t pull jeans over his leg braces. BLOOM spoke to Lucy about her clothing collection Seated Design, which she developed as a graduate student at the Parsons School of Design in New York.

BLOOM: I read an interview where you talked about how clothes express identity. What does that mean for people with disabilities who often can’t wear mainstream clothes?

Lucy Jones: Everyone should have the right to express themselves. Say I’m wearing trousers that have some sort of detail on the pocket. If I sit down, the detail doesn’t work in the seated posture. That’s a shame that detail doesn’t apply to someone who uses a wheelchair. They should have the same rights of expression.

BLOOM: My son isn’t able to fit standard sizes, and it seems that people with disabilities often have to choose function over style. They have to choose clothes that accommodate their differences, but aren’t necessarily the clothes they want to wear.

Lucy Jones: If you’re a great designer you should know how function and design go hand in hand. That needs to be drummed into designer’s heads. Function can determine style, and each should inform each other.

The biggest thing when I come up with a new function is I say ‘Is this stylish? Is this desirable? Would I wear it? Would my friend wear it? If I’m seated, do I feel great and comfortable and attractive?' When designing, we should be asking questions about how it looks in all different positions, and how it functions if you only have the use of one hand or you’re an amputee. We shouldn’t be designing based on how something looks on a hanger.

BLOOM: I understand your cousin Jake, who has hemiplegia, is the inspiration for your work?

Lucy Jones: Yes, he gave me the idea. He rang me up about four years ago and I asked him how his day was. He said it was really bad and the little things in life really get him down—like doing up his jeans because of the fly front and zipper. He dresses with one hand. So for Jake it's a chore. 

I remember thinking ‘I’ve never talked to him about that.’ I’d always seen him manage and he has the best attitude. I hadn’t considered it. The solution seemed so simple to me and I was appalled that there wasn’t anything out there for him. I took the idea back to my professors. I told them ‘Now I feel I shouldn’t be designing unless I’m designing for the right reasons.’

BLOOM: What are some of the ways that off-the-shelf clothes don’t work well for people who use wheelchairs or who have other physical disabilities or weaknesses?

Lucy Jones: A did a lot of focus groups and learned about things I hadn’t thought of. For example, the weight of clothes if you have trouble with balance or if one side of your body [is paralyzed]. Coats are super heavy. It’s very hard in standard clothing to maneuver your body into arm holes and zippers, especially if you can’t see them.

With many clothes, wearing them in a seated position is uncomfortable and not a good fit. If you’re seated, your jeans will fall in the back, because your fat and muscle spread. Your thighs expand, your kneecaps are bent and fabric gathers in the back which is uncomfortable.

Buttons are real challenges. Collars are an issue. If you’re self-propelling in a wheelchair your neck and muscles are far stronger, so you’re going to have more muscle bulk. So standard collar sizes won’t suit a standard top anymore. You’re going to end up needing a larger collar with a size small. These are things that have to be looked at.

BLOOM: How did you find models to work from?

Lucy Jones: That was really easy. I sent a mass email on Craigslist and posted on Yahoo classifieds and contacted organizations. I couldn’t believe the response I had back from people saying 'I'd love to work with you.' I did focus groups. One of my main models is Ronnie. I love her energy.

She has multiple sclerosis and she’s really struggled with clothing. She grew up wearing a standard size, then she began using a manual wheelchair and then moved to an electric chair. It was so interesting to see all of the alterations she had done by seamstresses so that clothes would fall better and feel more comfortable as her body changed. Ronnie can't independently dress. I was dressing her and I noticed how difficult clothes are for a caregiver dressing someone.

BLOOM: What is different about your designs for people using wheelchairs?

Lucy Jones: The main difference is the entry point into garments. I know elbows are an issue if you don't dress independently. It's uncomfortable when caregivers pull limbs through armholes. I found ways to open up the back seaming to expand the space to provide for comfort. Then it would draw with a string back into a tie or bow that is much more appealing.

I completely altered the anatomy of the sleeve (see photos below). I add way more fabric and padding around the elbow. That way if you're resting, your arms can lay more comfortably. If you're self-propelling, you have the amount of pull in the elbow you need, so it doesn't put pressure on the fabric. I did the same to the kneecaps: I took away all of the gathering at the back of the knee crease.

The other functionality I added is zipping. I realized when I was pulling Ronnie's arm through a sleeve how difficult it is to get a sleeve over the elbow. It's like putting your foot through a sock. Ronnie wanted to wear shirts. Shirts are everywhere in everyday society. She's a business woman and she wanted to look formal. So I did the shirt so that the whole arm can be zipped up in the sleeve. You put the arm through the armhole and lift the sleeve around the arm and zip it up, like you were putting a banana back together.

BLOOM: There are some designers who make clothes for people with disabilities but I've heard they can be quite expensive.

Lucy Jones: We want clothes that can be affordable. Because this project was a school thesis, I was allowed to think big and not think about the cost. A lot of my functions would not be cheap to produce and manufacture. But other things, like the sleeves that open with zippers, are easy and really cheap.

I would never want to make a separate line or category of clothes, because I think everyone should go and shop where they want to shop. It should be mainstream. That's why I'm working with Runway of Dreams. They're going to be having a huge launch with a major brand in March to adapt existing clothing. So it's the exact same line, the exact same clothes, with the adaptations built in.

BLOOM: What sizes?

Lucy Jones: It's kidswear but the sizing runs up to adults.

BLOOM: What is your role with Runway of Dreams?

Lucy Jones: I'm working with Mindy to launch a new campaign for diverse individuals who use wheelchairs or crutches or who are amputees. It's so diverse and obviously the alterations need to reflect that. It's problem-solving. It's knowing you can make someone's day easier and make them feel included.

BLOOM: Do you also do other work?

Lucy Jones: I won a nation-wide competition and am working with Eileen Fisher on a one-year residency as a social innovator. I'm working with two other girls to design solutions for all of the damaged garments that customers have brought back that we don't want to put in a landfill. There are heaps and heaps of damaged garments.

BLOOM: Wow! Amazing. How does it make you feel to know that Forbes has named you as a top entrepreneur?

Lucy Jones: I think this is showing that there are steps toward inclusivity in design. The fact that people nominated me and the design judges thought it was a great idea for the fashion industry. It makes me proud to know we're moving in the right direction.

BLOOM: Sometimes I feel cynical about people in fashion wanting to see more inclusion, or even understanding why it's important. It seems that how we define beauty is becoming more and more narrow.

Lucy Jones: What I have seen, and what I do think is so positive, is this collaboration by Runway of Dreams with the major brand I was talking about. We had an event with kids with disabilities modelling the new clothes and having the best day ever. Most of the parents were in tears because they said this is crazy to have our kids wearing the same brands as the other kids.

Kids with disabilities are singled out in the class and the parents said that to have their kid wearing exactly the same thing was a huge breakthrough. Parents of young kids were choked by the whole thing. One dad said he couldn't express how much it meant to him and his family. The CEO was present and the style team said this was one of the best days they've had at work. It totally shook them to see how happy the parents and kids were.

BLOOM: I imagine that experience made them feel like they were respected and valued. It said something about how they were viewed.

Lucy Jones: Even though it was positive, it was almost like, why should they have to live with that? Why hasn't this already been done at a high level of design?

BLOOM: I know parents who spend an unbelievable amount having mainstream clothes tailored, but sometimes they still don't end up looking right.

Lucy Jones: We want adaptations already in the garment. This is design for humanity. This is just one collaboration. The idea is to tackle loads of brands and if we can have the same experiences with many brands, I think we're going to make waves. I get shivers thinking about it.

BLOOM: You said your project at Parsons explored the relationship between disability and beauty. But disability doesn't usually fit into conventional ideas about beauty.

Lucy Jones: I think there is a way to change perceptions. There's no simple answer to that, it's just great design. We've been informed as a society that when people look or walk differently it's a bad thing. It's not, it's just adjusting your eye.

There's a famous furniture designer that I love, Charles Eames. He made a leg splint that I thought was a wall piece. I thought it was an ornament because it was so beautiful. That's really smart. I want to see hearing aids with Beats. There's no reason why walking canes can't be 3-D printed. When you have a wheelchair it doesn't have to look bulky and thermoplastic. You can redesign it to be whatever the person wants, whatever makes them feel themselves. Great designers know how to do it.

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My dad was disabled, and cooler than most

By Louise Kinross

Earlier this month Bill Peace, a visiting professor at Syracuse University, disability advocate and author of the blog Bad Cripple, posted a moving piece by his son Tom about growing up with a father who uses a wheelchair. Tom, now 23, has a degree in political science and plans to pursue a Master’s degree in prosthetics. Here he is with his dad in earlier days, and below at university graduation. We asked him some questions about his childhood.

BLOOM: What did you think of your dad’s disability as a child?

Tom Peace: When I was a young child, I always thought my dad's disability was cool. I got to ride around in his lap, which no one else could do. It was fun, especially when we went down hills at what my ‘little-kid mind' thought was incredible speed.

Some of my fondest memories as a kid are sitting on the floor of the living room with my dad, fixing or maintaining his wheelchair. There was a cool element to his wheelchair. [Working on it] was something my father and I did together. It was a shared experience that no other kid had. I didn't realize it at the time, but that was very important to me.

In my child's eyes, my dad was not disabled, just different. We went everywhere together. We travelled a lot and cruising down hills was the best. I remember one of my friends in elementary school telling me that he wished his dad was disabled. That really stuck out in my mind. My dad was disabled and he was cooler than the other ‘normal’ parents.

BLOOM: You wrote that growing up you stuck out wherever you went. Can you explain?

Tom Peace: My father and I stuck out, not only because many places were inaccessible, but because of the way people acted towards my father. It was the strange comments and attitudes that made me realize how different my dad was. I distinctly remember church was the first place I recognized this. I remember telling my father I didn't want to go to church anymore, and when he asked why, I told him it was because people were mean to him.

Old people would constantly harass my father and tell him that if he prayed enough, God would let him walk again. I was too little to get that this was because people could not imagine life as a paraplegic. I thought they were weird. Why would my dad want to walk again? Then we couldn't go on cool wheelchair rides and stuff.

Even today, people feel they have the right to say horrible things to my father. For example, strangers will come up to him and say “If I were like you, I'd kill myself.” Can you imagine saying that to another human being who is just out buying groceries or whatever?

Another common one is “It’s so nice to see you out.” Where is my father supposed to be? From my childhood to my teens to today, people have always come up to my father and expressed extremely negative views about disability.

Another thing that happens to this day is that people assume that I’m not my father's son. Health-care workers were the worst. Once in the ER my father was asked if he could prove I was his child.

Most often people assume I'm his caretaker. Even when I was as young as 10 people would bend down and address me, not my father. This still happens. When shopping together, a cashier will hand me the change or return his credit card to me. My father is clearly the older adult and the one who handed them the money in the first place.

People assume that just because my father cannot walk he also cannot think. He has a PhD from Columbia! As a child I was confused. As an adult I am angry.

Inaccessibility was a huge problem, as were obscure entrances. We could never go through the front door. It seemed like we always went to a rear entrance or had to use a hidden elevator. The elevators were often locked or broken (if locked, no one knew where the key was).

I still remember using the maintenance hallway of a fancy hotel in Seattle where we passed Mick Jagger. I thought seeing the back way in was cool as a kid. But now I realize that it was blatant discrimination and a major Americans with Disabilities Act violation.

BLOOM: Was inaccessibility the main challenge?

Tom Peace: Yes and no. Accessibility was certainly a challenge, but with enough time and effort, that was surmountable. Ignorant people proved to be the biggest challenge.

My secondary school administrators were outright hostile to any suggestion of equal access. Employees of all sorts of businesses clearly did not care about, or want to deal with, my father. Most access issues could be solved given a little effort and ingenuity. The primary issue was no one valued wheelchair access.

People who were supposed to be helpful were unwilling to help. The big challenge growing up was that no one gave a shit. 'Oh, the buses aren't accessible? Too bad for you!' It was not just that buildings and vehicles weren’t accessible. There was not the slightest effort to follow the law. Those blue wheelchair logos were a joke. I called them ‘the blue sign to nowhere.’

BLOOM: Tell us about some of the things you couldn’t do because your dad couldn’t enter a building.

Tom Peace: My dad and I could do anything we wanted. If a building wasn’t accessible, we did something else. I remember being in Boston. We went on the revolutionary war ship Old Ironsides. The lower decks weren't accessible. So my dad talked a commissioned sailor stationed on the ship into showing me cool stuff below deck that no one else got to see.

BLOOM: How did it make you feel as a child when you got to an event and realized there was going to be a problem getting in?

Tom Peace: In a word: excluded. I felt like there was something wrong about us that justified our exclusion. Very quickly I realized that there was nothing wrong with me or my dad. Like my dad, I got angry that the legally required accommodations were not made. It made me realize that companies and institutions like schools are not there for you, they are there for themselves. We did not fit into a standard mould, and were knowingly excluded.

BLOOM: I remember hearing your dad interviewed about a time when he was going with you on a school trip but there was no way for him to get on the bus, so he had to crawl on. What is your memory of that?

Tom Peace: That is a hazy memory. All I recall was I wanted to see the new Air and Space Museum. I also remember my dad bought me the coolest WWII bomber jacket.

BLOOM: You write about antagonism between your dad and your school principals: 'They did not like us and we did not like them.'  

Tom Peace: They absolutely made things difficult for us. They always locked the only accessible door in the evening. My dad was a Cub Scout leader. They knew my father and I attended Cub Scout meetings. Even knowing this, the doors were locked at the school.

The school flat out refused to consider getting or renting accessible buses. My school pretty much did everything possible not to comply with the ADA. We did not like them because they adamantly refused to place any importance on basic access.

They thought that making any reasonable accommodation was a choice they got to make. When my father asserted that the law required equal access he was called “entitled and bitter.” Worse he was “an expensive burden on the system” and wanted “special treatment.” Asking for equal access and to participate in my education is in no way special treatment.

BLOOM: You wrote about how when you graduated from university your dad couldn’t see you because the disability seating was at the back.

Tom Peace: Disabled seating was not at the back—it was non-existent. The place my father watched from was the only random place he could get to. All the floor seating was reserved in advance, with costly tickets. None of it was reserved for people like my father who actually needed to sit on the ground level. There were no clear lines of vision from where he sat to where I crossed the stage, so he couldn’t see me. This really put a damper on the day. My father wrote an extensive post about this incident.

BLOOM: How has growing up with your dad, including his disability and access issues, shaped you as a person?

Tom Peace: Growing up with a disabled father has made me the type of person that questions everything. I always ask: ‘Why are things this way?’ I am deeply mistrustful of institutions and authority figures. I don’t mindlessly accept the status quo.

Growing up I saw how power could be abused and certain segments of the population discriminated against. My dad was regularly screwed for the convenience of everyone else. I have always wanted to help those whose civil rights are ignored. Because of my dad I know the social support systems that exist are inadequate. Over 70 per cent of disabled people live below the poverty line and the vast majority are unemployed. This made me see, at an early age, the effects of wealth disparity.

Questioning the status quo as I do shaped my political beliefs and aspirations. I look at life as a series of challenges. I know that nothing is impossible with a little effort, ingenuity and creativity.

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What one mom did to get her disabled son on the playground

Andrea Davila is leading a project that’s raised over $500,000 to build a barrier-free playground at Deer Park Public School in Toronto. Andrea’s nine-year-old sons—twins Tomas and Martin Tobin—attend the school and love it. But Tomas, who uses a wheelchair, is unable to get into the current playground (see photo above): it’s bounded by large stepped logs and covered in wood chips. So Tomas sits on the sidelines, watching. Tomas is part of the Intensive Support Program (ISP) at Deer Park, which supports kids with a variety of physical disabilities. “Right now there’s nothing for these kids to play on outdoors, no accessible equipment and nothing they can enjoy,” Andrea says. We spoke about her role in bringing a barrier-free playground to life.

BLOOM: How did you get the idea?

Andrea Davila: A teacher who used to work in the ISP program had an idea to build a $50,000 gazebo with a ramp. After he left I said ‘I think we should continue with this idea’ and I took it to the parents’ association. They said ‘$50,000, are you crazy?’ Nothing that high had ever been raised for a project and it was outside what they usually supported. They started asking questions and when I told them there were only 12 students in the ISP program, they didn’t think the numbers warranted it. I said ‘It’s something that every single kid in the school and community can use.’

BLOOM: How did the project expand from a gazebo to a playground?

Andrea Davila: We found a huge potential space of land that wasn’t being used at the school, and it had great potential. We asked the Toronto District School Board (TDSB), ‘what do we need to do?’ They said you need a landscape architect, a design and a topographical survey. That would cost about $10,000.

BLOOM: How did you raise the first $10,000?

Andrea Davila: Pizza lunches, bake sales and a skate-a-thon. It took about a year.

BLOOM: Who is working with you on the project?

Andrea Davila: Two other parents whose children don’t have disabilities.

BLOOM: Were the other parents of kids with disabilities supportive?

Andrea Davila: Not much. They were interested, but they never showed much support. It wasn’t easy to find volunteers for this project.

BLOOM: Can you describe the plans for the playground?

Andrea Davila: It will have accessible equipment like a rotating climber that is low to the ground; special-needs ‘dish’ swings; and basketball hoops at different levels so kids in wheelchair and regular kids can throw to different heights. There will be an art and music area to support the kids with sensory issues. We’ll have raised sand tables, a wider slide so that a parent with a kid with a disability can support their child, drums and xylophones and lots of trees and areas with natural elements like wood and rocks that are safe. There will be picnic tables that are higher so a wheelchair can go under. The idea is to integrate and include everyone. Our goal is that children of all abilities will play together.

BLOOM: Why did you want to be a part of this?

Andrea Davila: I got inspired by the teacher who wanted to do something for the kids in this program and because of my perspective as a parent of a child with a disability. I knew what would make it barrier-free and easy to access—I knew about the things we have loved in other places. Right now the school doesn’t have an outdoor play area that can engage Tomas in any fun activity. It’s not easy to see every kid playing and having so much fun and my kid just sitting and watching.

BLOOM: What is the cost of the project?

Andrea Davila: The project is estimated to cost $775,000. To date we’ve raised over $560,000. The city of Toronto loved our project and our councillor helped us raise $350,000 from the city. The TDSB gave us $45,000 because for full-day junior and senior kindergarten they need to improve the outdoor area and this project matched that perfectly. The Toronto Eglinton Rotary Club gave us $36,000. And the rest—$130,000—has been raised through the school, including an amazing anonymous donation from a family. We’ve run pizza lunches, a skate-a-thon once a year, two dance-a-thons a year and many bake sales, and the fun fair at the school supported us. Because the project isn’t fully funded yet, we decided to do it in phases. We hope to break ground in spring 2016 with phase one, which is our biggest phase.

BLOOM: What advice would you give other parents wanting to raise funds for accessible playgrounds?

Andrea Davila: Don’t think only about your school, but the community overall, and that includes the elderly. Our playground is a combination of pavement and rubber surface so people using wheelchairs or walkers or crutches can go everywhere. Look for advice from other schools that have successfully raised money. We asked Maurice Cody, which had raised $400,000 to build a turf, and they really helped us. We partnered with The Toronto Foundation for Student Success, which is an independent charitable foundation of the TDSB. They act as financial trustee for the project. They helped us create online donations. We got in touch with an accountant at the TDSB and he created an account so that all of our funds could be in one account. Find lots of volunteers because you can’t do this on your own. And it’s ideal if you can find people with experience in fundraising and marketing and communications.

BLOOM: How do you feel about the success you've had?

Andrea Davila: I think it’s very successful so far, but it’s not finished, and I won’t feel any success until it’s actually built. It’s been really hard work and team work and involved many people.

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Tuesday morning read and listen

Who knew the Blue Lagoon in Iceland markets its services to wheelchair users and those with other special needs?

Check out CurbFree by Cory Lee (in photo above) for this detailed account of his recent trip with a wheelchair. And here Blue Lagoon lists its accessibility features.

Canadian lawyer David Lepofsky gave a brilliant talk at the 2nd Annual CP-NET Science and Family Day last week on making education disability-accessible. Please take a listen.

And read these two important stories from The New York Times over the weekend. In The Myth of the 'Autistic Shooter,' Far From The Tree author Andrew Solomon writes that there's no connection between autism and murder, despite scapegoating after a recent shooting in Oregon.

And this fascinating and horrifying review of the biography of 'The Hidden Kennedy daughter' documents the Kennedy's family inability to accept Rosemary Kennedy, who struggled to learn to read and write and couldn't compete with her brilliant and athletic siblings. They sent her away to numerous schools, camps and convents and eventually authorized a prefrontal lobotomy that left her permanently disabled and unable to care for herself. The details are shocking.

Happy Tuesday folks! 

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The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo! Louise

By Veronika Lukacs

Every so often I read a local news story about someone's experience in rehab following a devastating physical injury. Nine times out of 10, the story makes me angry.

I'm a newly graduated occupational therapist in a happy relationship with a handsome man named Russell Winkelaar, who sustained a T6 spinal-cord injury at the age of four from a head-on collision with a drunk driver. Russell is paralyzed from the armpits down and uses a manual wheelchair to get around.

Prior to studying OT and meeting Russell, I spent two years looking at the effects of mass media through a master of arts degree at Western University. People are surprised to learn about my media background, but I think it complements occupational therapy practice well.

A person's cultural environment can be a barrier to meeting rehab goals, and it can also shape what kinds of goals a client wishes to pursue. What we see in the media—be it a news article or fictional TV program—gives us clues about the meaning our culture ascribes to life with disability. It also tells us what rehab outcomes the mainstream considers successful. Many of the stories I read are similar and have become cliché.

One popular one goes like this: Young, athletic man in his early 20s breaks his back pursuing an extreme sport. He sustains a spinal cord injury, and doctors tell him his chances of walking again are non-existent to slim. The young man goes through gruelling and intense rehab sessions. Through hard work, personal strength, and perseverance, the young man defies all odds, proves the medical team wrong, and walks again.

I call this the "miracle story." The miracle story often features a person with spinal cord injury, but there are variations that focus on people with congenital disabilities or other acquired disabilities.

The miracle story bothers me because "success" or "overcoming disability" is always attributed to personal strength and willpower. That's great for the person who walks again, but what does it say about the person who doesn't? The miracle story burdens people by making them feel like it's their fault if they don't recover. It suggests that people control their rehab outcome through positive thinking.

The miracle story is misleading. It's usually vague about the type of injury the person sustained. Often times, the individual had better chances of walking again, but the story conveniently left this out.  

Yes, rehab can improve one's chances of re-gaining mobility, but there's also a great deal of luck involved, depending on the type of injury or disability. People don't like acknowledging the luck factor in rehab outcomes. And the reality is that no two people's situations are the same

Unfortunately, I've seen people in rehab programs read these stories, compare their progress and feel they didn't measure up.

In addition to demoralizing patients who won't walk again, the miracle story influences how loved ones support the person. Family members ask me about these stories and share them in hopes of raising the client's spirits and motivation. When this happens, the person who doesn't make a full recovery not only feels their own disappointment, but that they've somehow let their family down.

The miracle story serves as a reminder that our culture sees wheelchair use as undesirable. Walking is the ultimate goal, even though for many people it isn't attainable.

"Everyone wants what's best for their child, but we're stuck in the mentality that getting back to the way you were before is best, as opposed to learning how to adjust," my partner Russell says. "Instead of waiting for the child to walk again, and being depressed for a few years or in denial, parents need to build their child a ramp."

I'd like to see more varied news coverage of the rehab process to balance out the negative effects of the miracle story. Why is this story held up as the ultimate success? What about the person who never walks again, but explores new passions and contributes to their community?

While "being positive" has its place in rehab, a distant hope of returning to an old life may not be beneficial. Full recovery and walking need not be the only goals, and people in rehab need constant reminders that people with disabilities can lead happy, fulfilling lives.

As an occupational therapist, it's difficult to advocate for changes to how the media covers rehab. It's also challenging to balance inspiring hope in clients while remaining realistic about the likely outcomes. In fact, it's often impossible to know for sure what rehab outcomes are realistic!

What we can do is address the problems with these stories with clients and families. We can explain why the experience of one person in a news article is just that—the experience of one person.

Russell says that changing society's views from the ground up is essential. "If close family members won't accept that their loved one won't walk, how is society supposed to?"

People need strategies to help shift their perspective on what it means to live with a disability. That's why peer support from those who have gone through it, and counselling programs that address psychosocial need, are invaluable.

I'd like to see future programs directed specifically at assisting family and friends in how to best support their loved one.  "Disability is always going to exist," Russell says.  "It can happen to anyone and no one wants to talk about it. That's why it's so terrifying. If people could see that having a disability isn't the end of life, they'd be a lot less afraid of it."

Please send your story ideas to lkinross@hollandbloorview.ca

Don't forget to fill out our BLOOM survey for parents, professionals and other readers.

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Why can't you just forget 'that thing?'

This is an excerpt from Lisa Bendall's latest book Magic Moments: Twelve Little Stories About Disability, Family and Fairly Normal Life. Lisa is a Toronto writer who lives with her husband Ian, who has quadriplegia, and their daughter Emily. Her blog www.50gooddeeds.com shares inspiring ways to make the planet a better place. Thanks Lisa!

By Lisa Bendall

“Do you have a driver’s licence for that thing?”

If my husband and I had a dollar for every time we’ve heard that, we would have our mortgage paid off. Paid off? Heck, we wouldn’t even have had to take out a mortgage in the first place.

“You’re a pretty good driver in that thing!”

My husband uses “that thing”—namely, a power wheelchair—for his mobility. So of course his manoeuvring skills are not too shabby. After all, he’s had a couple of decades of practice at it. Usually, that’s the kind of response he will muster, accompanied by a weak, patient smile.

“I know what it’s like—my father’s in one of those things.”

Oh? And his lessons in wheelchair etiquette went right over your head?

“That’s a pretty nifty way to get around, eh? I wish I had one of those things!”

You’re looking for a shortcut? Allow me to give you the starting push.

Anyone with a wheelchair user in the family is familiar with openers like these. We hear them so often we could write a top-10 list for David Letterman. And we probably all have a ready store of sarcastic retorts—although, admittedly, we usually put them to use only in our imaginations. At least, I do. Thus far, I have not been able to summon the nerve to reply to a “So, what happened to you?” with a “Nothing—but hey, what happened to you?”

Deep down, we know they mean no harm. They’re just looking for a way to make conversation, and for some reason my husband’s wheelchair seems to them a much more fascinating icebreaker than something so mundane as the weather. In truth, though, I think we could be trapped in a blizzard, and the person trapped with us would still be asking my husband how fast “that thing” can go. And they wouldn’t be asking so he could go for help.

This summer we visited my husband’s uncle and realized that the new weather-stripping he had installed at the front door since our last visit had transformed a tight passageway into an insurmountable one.

As we made this discovery, and realized we would need to change strategies and take the back door, my uncle-in-law’s neighbour came bounding across the street. Rather than introduce himself, the first words out of his mouth were: “My mother’s in one of those things!” And then, as though he had just uttered the secret password at an exclusive club, he proceeded to wrench the wheelchair away from me and struggle against the impossible doorway.

Believe me, it took a few minutes to wrench it back—he was stronger than me.

I wish the general public could learn from their children. Kids are so much easier to deal with. They have yet to learn that individuals with disabilities are anyone other than ordinary people with really cool accessories. The most frequent greeting we get from children in public is not “You’re fast in that thing!” or “A kid in my class is in one of those things!” but: “Hi.”

Hi… Simple, yet classy. I like it.

I suppose we’re a little further progressed than we used to be. It wasn’t that long ago when people with disabilities didn’t even get to the point of exchanging words with children. At least those days, when parents yanked their children out of a wheelchair user’s path faster than you could say “Elephant Man,” are becoming less frequent. Disability is not as contagious, I guess, as it once was.)

I only hope the public gets comfortable approaching people with disabilities sooner rather than later.

Personally, my tolerance will last only so long. Otherwise, the next time someone asks my husband if he’s “always been in that thing,” my inquiry about what they’ve “always been” just might not be printable.

 

 

 

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How to rock Miami Beach in a power wheelchair

By Louise Kinross

In February, Maria Tassou did something she’d never done before.

She flew to Miami Beach with a friend to hang out at the ocean.

Maria, who is a Toronto real-estate lease administrator, had never travelled without her family.

That’s because Maria has Arthrogryposis, a condition that causes stiff joints and weak muscles. She can’t propel herself over distances in a manual wheelchair or carry luggage. The places she’d travelled to in Europe with her family hadn’t been accessible enough to bring her power chair, so she relied on her parents to help her navigate in her manual chair.

This year, Maria planned a trip to Miami with her friend Michelle, who also uses a power wheelchair, knowing she could count on better accessibility. Michelle also had lots experience travelling on her own in the United States.

BLOOM asked Maria how she planned for the trip and what she’d recommend to parents travelling with children with disabilities.

BLOOM: What were some of the barriers you’d faced travelling?

Maria Tassou: I can’t push anywhere long distance in my manual chair and lifting bags was challenging. I had a suitcase with two wheels but it was difficult for me to manage it with my power chair. So I wouldn’t have been able to leave my condo alone and get to the airport with my suitcase. Now you can get luggage with wheels galore, and that’s really helped. I bought a suitcase with four wheels that spin and it’s easy for me to manage it from my power chair.

BLOOM: Did you have any problems with flying?

Maria Tassou: Because my knees don’t bend nearly as much as someone else’s, I have to have extra leg room and the ability to sit forward in the plane so that I can change my posture during the flight. Even though I’d fill out forms asking for bulkhead or window seating, I often didn’t get it. In one case, when I was on a charter flight with my family, the seating was so cramped that I couldn’t move for nine hours. By the end of the flight I could hardly handle the physical pain I was in. My Dad tried to help me but he couldn’t get me out of my seat. Two grounds people had to come and someone took my legs and someone took my arms and they lifted me up and over the seat. That made me nervous about flying on my own.

BLOOM: How did you solve the seating issue on this trip?

Maria Tassou: My friend had experience flying on a number of airlines and had had the best experience with Air Canada. She said ‘It's worth paying a little more if need be to fly with them because they know how to treat you and your chair right.’ Since I was travelling with someone who wasn’t able-bodied, I wanted to make sure everything went as smoothly as possible. I contacted Air Canada about getting elite seats, where there’s a little bit more room. Typically people pay a small fee for these seats, but I’d read that sometimes they’ll provide them to people with disabilities. Air Canada gave us those seats and we didn’t have to pay for them. They were great and made a big difference for me.

BLOOM: Did you have any issues with checking your power chair?

Maria Tassou: One thing we liked about Air Canada was their policy that you can keep your power chair while you’re in the airport right up until you get to the door of the plane. On some airlines they take your chair an hour or two before the flight and give you an old-style manual chair to sit in which is hard to push. With Air Canada, the grounds people who are going to put the wheelchair in cargo meet you at the door to the plane and ask what the vulnerable areas of the chair are. People with disabilities are boarded first and they bring the flight chair to you so you can transfer in privacy.

BLOOM: How did you make sure that the Miami area you were staying in was going to meet your needs?

Maria Tassou: You can find out a lot online, and then you have to phone to be sure. I did a Google search for ‘wheelchair accessible Miami.’ For example, there’s a website called Oyster.com where they often put ‘best accessible places to stay’ for a given city. also I found out that every bus in Miami is accessible and there were a fair number of wheelchair cabs.

BLOOM: What about your hotel?

Maria Tassou: Most hotel websites have filters so you can ask for a ‘wheelchair accessible’ room. But you have to phone to clarify exactly what they mean by ‘wheelchair accessible’ and what you want. We wanted a roll-in shower, not a bathtub, and luckily the hotel was very clear on its website, and with their images, that they had a roll-in shower.

BLOOM: Were there any other issues with your hotel room?

Maria Tassou: I had called to confirm we were getting a fully accessible room that included the balcony. We felt if we’re going to do this, we’re going to do it right, and we wanted to sit on the balcony and enjoy the ocean. When we got there, we realized there was a step onto the balcony. I told them ‘We paid a lot of money to come here on the understanding that the balcony was accessible and, to their credit, they dug high and low and found some very sturdy ramps for us.

BLOOM: What was it like navigating the beach outside your hotel?

Maria Tassou: There was a great pathway behind our hotel that went for a long, long stretch before you had to get back to the sidewalk of the street. I had googled ‘Miami Beach accessibility’ and found a Miami Beach government site showed where you could find mesh mats. These are mesh pathways with runners on the beach so that you can travel on the sand with your chair and not get stuck. On the same website, when I scrolled down, I was surprised to find that they also had motorized beach wheelchairs that they loan for free to people with disabilities.

BLOOM: What kind of chair is that?

Maria Tassou: It’s a basic power chair with really big flat wheels that can travel on sand—like a little dune buggy. It’s amazing because the mesh mat only goes so far on the beach. The ocean rescue staff told us: ‘We only loan them to people with disabilities so that they can experience the same things everyone else does walking along the water line.’ The beach chairs were a fun adventure that we don’t get to experience here in Toronto.

BLOOM: What was it like to be away with a friend rather than your family?

Maria Tassou: It was freedom. I’m an independent person and when I’m at home I do everything myself, so it’s weird to have to rely on people when I travel with my manual chair. Being somewhere else and really enjoying it with my friend gave me confidence that I can travel with anyone.

BLOOM: What advice would you give parents who want to travel with their kids with disabilities?

Maria Tassou: The key thing is to plan. I found reading online, phoning and asking as many questions as you can ahead of time helped make our trip smooth. If you're told something is ‘accessible,’ ask what that really means. Don't take it for granted that their definition is what you need.

BLOOM: Any other recommendations?

Maria Tassou: When it comes to access and accommodations 'you get what you pay for.' By no means would I say overspend, but where a price differences isn't significant and is something within budget, experience has shown me that in terms of accessibility, treatment and so on, you'll be glad you spent that little bit extra.

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