Blind Beginnings Fills Mentoring Gap for Young People and Families

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Born with retinitis pigmentosa, a condition that causes deteriorating eyesight through childhood and adolescence, Shaun Marsolais has had less than two percent vision since she was 18 years old. It has never held her back. Marsolais went on to earn a BA from the University of British Columbia, completed an internship at a school for the blind in England and, in 2012, she completed a Master in Vocational Rehabilitation Counselling.

Marsolais also competed (in tandem bicycle racing) at the 2004 Paralympic Games and cycling proved to be a very important aspect of her life. It led her to Daniel Kish, a blind American who could ride a bike (by human echolocation) and taught other blind people to do the same. Kish, the founder of World Access for the Blind, taught a “no limits” philosophy for the blind that Marsolais enthusiastically supported. On her return to BC from England, Marsolais went to work at the Canadian National Institute for the Blind (CNIB), first as a career and employment counsellor and then as a counsellor/coordinator for children & youth services. In 2008 Marsolais, who is now 41 and has a child of her own, left CNIB to found Blind Beginnings, which offers support programs for blind and visually impaired young people in BC.

How did you start Blind Beginnings?

I was frustrated at the lack of services provided to children and youths and their families, so I quit my job. I honestly didn’t know the first thing about starting a non-profit so, really, it was charityvillage.ca [an info source for non-profit organizations] that helped me a lot and just Googling — how do we do this? Do we become a society? We need to get charitable status. We need to figure out what our purpose is.

I had been working with the CNIB previously in a role with children and youth and their families, so I had some parents who believed in what I wanted to do, who followed me and were on our founding board. Together, with their support and their help, we created Blind Beginnings and it evolved. I really wanted to ask parents and youths what services do you need, what should we be providing? When we developed the board, we wanted to make sure that at least 60 percent of the board was a family member of a child who was blind or blind themselves so that everybody on board would understand what the issues were and we wouldn’t be fighting amongst ourselves to decide what services to provide.

Is that a problem that exists at the CNIB or other aid organizations for the blind?

The CNIB serves people from the cradle to the grave; that’s their mandate. From birth to death, basically, and the majority of their clients are seniors who have lost their vision due to age-related conditions. So if that’s the majority of their clients, it makes sense that that’s where the majority of their resources would go. Because blindness in children is so low-incident, I had to fight to expand the services we were providing there. It’s completely different when you’re providing services for a child who’s never seen, versus somebody who’s 70 that’s losing their vision. They have an understanding of the world because they’ve seen the world, whereas a child born blind, there’s so much that we take for granted that we learned through vision. A lot more is needed for the kids in those early years so that they don’t need a blindness organization later on in life.

There isn’t more specific aid for children?

There is support for blind children, but it’s very – what’s the word? – disjointed. Right now, in British Columbia, if you are birth-to-five and you’re blind, you are supported through Sunny Hill Health Centre for Children. They have a vision impairment program and you have a vision consultant that is kind of your case manager for the family. They make referrals to other services the child might need, like physio or occupational therapy or speech-to-language therapy. Once the child is school-age, then they enter the school system, and then their teacher for the visually impaired is the main blindness expert in their life.

But that’s education-based, so the teachers are trying to get them up to par with academic studies and trying to do some life-skills on the side. But they really don’t have time to be focusing on [the life skills]. Then the Ministry of Family Development has a little bit of funding for early intervention as well, so it’s three different government agencies that are providing services to these children, but none of them are allowed to talk to each other because of confidentiality. It’s not a smooth process where kids are just supported right through to adulthood. Then you’re relying on charities like Blind Beginnings to fill the gap.

Is Blind Beginnings trying to fill a specific gap in blind children’s education or trying to create a new model for providing those services?

We’re trying to fill the gaps, but it’s not necessarily education [-based]. What we’re really trying to do is connect families with each other because blindness is very low-incident so, say there’s approximately 1,000 children in British Columbia — that’s birth-to-19 who are born either partially sighted or legally blind. Often you’re the only one in your school or the only one in your community and parents don’t know other families. It just feels very isolating. Part of what we do is bring families together to meet each other, so that they don’t feel so isolated.

Then there’s the mentoring that takes place as well. [Blind Beginnings’] youth leaders are trained to support younger children who are blind. As kids come to realize they’re different, they can have a relationship with a youth leader who will mentor them through that transition. Youth leaders are invited to help with all of our other programs so that families get to meet older youths.

And then we do a lot of experiential learning-type stuff so, in our junior sports club, maybe we’re doing a cooking activity, so it’s supposed to be fun – we’re making cookies – but we’re also learning “How do you measure the flour if you can’t see the measuring cup?” or “How do you stir if you can’t see that you’re flipping things out of the pot while you’re stirring?” We’re trying to teach them life skills without them really noticing that that’s what we’re doing, while having a fun time, and just introducing them to a wide range of experiences.

We also offer counselling to parents and to youth around their vision loss, and we have a parent support group, and parent workshops to teach parents about the kinds of things they’re going to need to know about as they’re raising a blind child. We’re not trying to duplicate what somebody else is doing. We’re not touching health and we’re really not touching education, either. That’s not what we’re experts in. We’re really just trying to focus on that social, experiential, mentoring connection kind of stuff.

Are there similar organizations in other provinces that you’re aware of?

Not exactly. There is something called Views [for the visually impaired] in Ontario and I believe it’s more of a parent’s advocacy group. So it’s parents that have blind children that are advocating for services for their child. I believe Alberta has an organization that’s driven by families as well [Alberta Society for the Visually Impaired], but I don’t know much about what they do. As far as I know, Blind Beginnings is pretty unique in Canada. In the States, they have things like the Blind Children’s Learning Center and they have way more than we do. Their system is better. They have one government body that supports children through adulthood. It just makes more sense.

We’re dealing with a fragmented system here, so I have to make the best of it. When I worked for CNIB, it’s a national organization, but you can’t do the same things for a family in Vancouver that you’re going to do for a family in Prince George. What you need to provide is going to be different —  there are different services available. So we’re trying to be provincial. It’s harder to do that when we don’t have consistent funding, so we’re trying to create programs that families from everywhere in the province can access – like support groups through Skype or parent workshops where parents can call in or Skype in. Our youth leadership program brings in youth from all over BC for a training weekend. Another big part of what we’re trying to do is make sure that these kids grow up and get a job, make sure that they know that they’re capable, that they can be employed and that they have the confidence to do that.

You weren’t born blind but lost your vision progressively. How different were the services when you were growing up?

For me, what we didn’t have when I was growing up was support for my parents. I always say to people, in those early years it’s really the parents that I need to reach more than the children because for a child that’s born blind, that’s just their normal. They don’t know any different. It’s the parents that are devastated and at a loss and they really don’t know what to do and where to turn. My parents didn’t have that kind of support. They just didn’t. No one really said to them, “It’s going to be okay. Look, here’s a blind teenager,” or “Here’s a blind adult that has a child, that is married, that is working,” or whatever. They just didn’t have that sort of example to relax and see that, “OK, there’s still a future for my child.”

For me, I started going to a blind summer camp when I was 13 and that really changed my life. Meeting other kids that were blind was the thing that I needed to realize that, “Hey, I’m still a normal kid. I just have this thing that is different, but look at all these other kids that are also blind and they’re normal and they’re cool and they’re funny.” It didn’t happen over night, but that really helped me realize, “Okay, I’m still normal; I just have this different way of viewing the world.”

So some of the programs I’ve developed are based on some of the services that I did have as a child, but that’s part of the problem in British Columbia. The funding sources have changed over the years. CNIB used to have employment counsellors that worked with youth on getting your résumé ready, how to apply for a job, how to prepare for a job interview. Now they don’t have that anymore. They lost funding for that, so that’s something that Blind Beginnings is trying to do with our What Happens After Grad workshop. I used to have a child and family counsellor through CNIB when I was a teenager and they don’t have that service anymore and it hasn’t been replaced with anything. Partly it’s what I didn’t have and partly what I did have that’s helped me [create Blind Beginnings].

I don’t want the families to think I don’t support the CNIB. I do. I think that CNIB does a great job for seniors, [but] I understand why they don’t do as much for children, because it’s not the majority of their clients.

I understand that meeting Daniel Kish was a major influence.

It’s his no limits philosophy that I really identified with when I met him. He said, “Everybody has limits, but when you have a disability often people decide your limits for you. And usually they’re wrong. People with disabilities should have the power to choose their limits for themselves.” That is what I really identified with and I adopted his no limits philosophy when we started Blind Beginnings. I also think it’s very inspiring how he travels the world and teaches people everywhere how to use echolocation [a method for the blind to be able to know their surroundings through clicks and echoes, much like a bat] and self-directed discovery.

Echolocation is something that blind people have been using forever, so there are a lot of blind people who will say, “Yeah, I use it. What’s the big deal?” A lot of people don’t really know how much you can take in about your environment using echolocation. I certainly didn’t. No one ever said the word to me when I was growing up… Part of what [Daniel Kish] does is get kids excited about exploring their environment because often, when you’re blind, you’re just taken from one place to another and you don’t know all the wonderful things that are in your path along the way. So part of it is, “Hey, let’s just go outside and see what’s around” or “Let’s explore this office building. What’s in here? What can we find when we walk around and touch things and explore?” It’s pretty empowering for the kids when we do that.

How many clients do you have?

We call them “members” and we have around 150 members and 100 of them are families, and it’s roughly four people in a family membership, so we’re looking at 400-450 people that are probably being served by our organization. It varies from month to month and what’s going on. But if there’s a thousand kids in BC and I only have 150 of them, then I know I haven’t reached everybody. People just don’t know our name, which is why stuff like this is so important for me to get the word out.

Does it cost anything to be a member?

It’s $10 for an individual, $25 for a family (for the year) but we’ll waive the fees for anyone who can’t afford it. Then there’s no cost for any of our other programs once you’re a member.

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