We love featuring stories of people making a difference in the blindness community. Kerry and her brother Brian are making waves – radio waves – on their show Outlook. We hope you enjoy Kerry’s post about growing up with sight loss and finding her voice in advocacy.
Guest post by Kerry Kijewski
In disability activist Judy Heumann’s book Being Heumann: An Unrepentant Memoir of a Disability Activist, she says she believes she was meant to have a mother who would not give up on her daughter who was born with a physical disability. I don’t know about that in my case, but I do know I am lucky to have been given the advantages and foundation from my parents. I recognize my privilege, having them firmly in my corner.
This doesn’t mean I have it all figured out (no matter how much I wish I did), even as I am staring down forty in a few short years. I am further along because of the support I grew up with and still count on today.
I think of my parent’s life before, when I wonder what they thought of blindness, if they even thought about it at all, before my brother and I came along. After all, they weren’t expecting their third child, their second girl, to be born low vision. My two older siblings were born with sight and my parents were caught off guard when they began to notice something wasn’t quite right after I was a few months old. My mother had already raised two babies and she knew how to spot the milestones. She noticed her baby girl wasn’t following things with her eyes. She explained her concerns to the family doctor and he did not seem too concerned. This began my mother’s journey with advocacy which would take us through having to push to be referred to an ophthalmologist, through to diagnosis of a retinal disease known as Leber Congenital Amaurosis or LCA for short, right up into pushing for integration in the same school my older siblings attended. She could better speak to that piece of the puzzle, but suffice to say it was perfect training for my little brother, Brian, three years behind me. They had the perfect set, two boys and two girls, two sighted and two not.
I can only imagine the stress and fear that comes with parenting at all, as I am not one, but to worry your two children with a disability wouldn’t receive the necessary services in education and to wonder with all the mixed messaging about living with a disability like blindness our society puts out there, especially thirty years ago. What kind of life would we have? Good question. What luck, to have a sibling with the same condition, someone I could relate to and understand in a way I couldn’t with anyone else. He was always just right there, giving me the honour of going first though I thought nothing of it early on, of making a path through life that my younger brother could rely on to clear the way and face down some of the challenges that go along with learning to navigate life with a disability.
I went first, with braille and school and special education teachers.
Our duel journey led us to an eventual diagnosis of kidney disease to go along with the genetic blindness and a reforming of the original diagnosis into a rare version of LCA that became a rare syndrome: Senior Loken. More surprises, not always so welcoming, but I am glad I could go first and fully fill the role of big sister.
Now I find myself approaching mid-life, still searching for my place in the world, and so does he. This wasn’t due to a lack of guidance and love from our parents. They’ve always been there, steady and solid, a nice model for parents everywhere. This pressure on them is, I would suppose, a heavy mantle to carry, but I feel that same sort of mantle as my brother’s bigger, also blind sister. It is a position of high honour, at the same time, in my case at least. I don’t know if my mother really had any idea what she was doing back then as I don’t now, by which I mean that the example she set for us, the sacrifices they both made through the years, all the worry and the uncertainty. She taught us, even though we never knew. Her advocacy in our early lives showed us about speaking up for what’s right, for what’s required and these days my brother and I find ourselves wading into the advocacy world and it rather snuck up on us both.
In 2017 an old friend, (a guy I met at guide dog school twenty years before/who became my brother’s roommate for a period of time in Toronto ten years ago), was unhappy with how blindness was seen here in Canada. He told us about some work he’d done while living in the US for a few years with an organization called the National Federation of the Blind and how he’d discovered there was a sister org here in Canada. This began our involvement with the Canadian Federation of the Blind.
We had it plenty good all our lives. Our parents were always there, while still encouraging independence and the freedom to mess up with the reassurances that there’d be someone always there to catch us if we fell too hard. It’s a fine line, our parents not letting their own personal fears dictate how they raised us. We always had all we could have needed or wanted from a regular upbringing with a stable family unit and the security of present parents.
Regardless of some of the pitfalls of getting into activism, the oddity of a monopoly of service for the blind in Canada up against all the numerous organizations and foundations set up to provide services and tools for the blind that exist. We had been taught our value growing up, but still, the world of adulthood is a minefield for anyone. As blind adults, I lost my way more than once, leaving my little brother on his own to figure out a few things. Soon he went first, moving to a big city and figuring out public transit, the subway system of Ontario’s capital.
Brian was willing to do what I was not, leaving the cocoon of our rural area.
I still struggle with confidence and the need to fight off feelings of shame around the little sight I had as a child and have been losing, gradually as the years pass. I now follow his lead as we travel together on buses and through unfamiliar surroundings, though he won’t always be there in that way.
Together we’ve taken on advocacy, becoming more vocal in speaking for ourselves as blind Canadians, (still more to do) no longer willing to accept what still is a feared thing in our society: Blindness. Some can’t even say the word without hesitation. We’ve benefited from our parental wisdom and love and have made use of many services available to us, as we’ve come to realize we must find our voices.
We have followed our passions, both creatively, mine being the written word while my brother’s has been music and audio. We grew up recording sound and voice with tape recorders. We’ve captured old family and childhood memories. We even made a pretend radio station, unfortunately, no surviving record of this show made it to adulthood along with us. My brother has been in bands throughout the years, teaching himself, since he was eight years old, when he first picked up a guitar. For myself, it was hard letting go of my beloved colours. As my sight dwindled, I pivoted toward words.
These days we host a talk show about blindness and disability on a local university radio station (94.9 CHRW Radio Western). Outlook is a show about accessibility, advocacy, and equality. We want to use our unique familial and creative partnership to make something that could educate sighted people about the capabilities of the blind and to be an example to other blind people who hadn’t heard someone in media who could truly understand the ups and downs of being blind.
In this new century, as technology is everywhere, and as I’ve followed my little brother’s lead in accessing it, I’ve watched my parents navigate social media. As I’ve been publishing a blog and now having my writing online, it’s there I come across blogs like this very blog I’m guest posting on today with a parent of a blind child. I’ve curiously followed other blind creators and activists and also their parents who often advocate and share their journeys. I follow blogs like this one and the stories on Facebook from young new mothers like Happiness Is Blind who cause me to ponder what my mother would be doing with advocating for us with the help of social media that’s so a part of our world now. Would she be right there, sharing and looking for support from other parents raising blind children, on a blog or on Facebook?
I empathize with these mother’s now, from my blind adult perspective, but as you can see from this post, I have no real tips to offer other than the lessons life sneakily teaches along the way. Clearly, every family is different and each journey through disability services and disability stereotypes that continue to leave a mark throughout society, in our institutions, and in our lives as blind people, this often causes great confusion and/or isolation. All I can say to this is that it is often hard to think about others when we’re still figuring out our own path. It’s tempting to stare straight ahead and focus on your own life, unable to pay attention to anyone else’s. But as a writer, having been taught about empathy and compassion, I can’t help but look to the stories of other people, oftentimes those who are going through or have gone through what we may have. I believe in pollyanna things like helping others where ever possible and thinking of ourselves as one in the end. If we feel like things aren’t where they should be and if we want to make the world a better place, we have to give back, where and when we can. Does this push us out of our shyness and nudge ourselves into the conversation because it’s going on, whether we’re in it or not, so why not have a voice in the silence and in the din swirling around us on a daily basis? So thank you, Navigating Blindness, for sharing your space here with me today, for letting me share my story with your readers. I wish all the best to your family as you all navigate your own family’s journey through blindness.