living with deafblindness
10 minute read
after reading helen keller, penny leclair started looking for people who understood braille. supplied
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when penny leclair was a young child growing up in the ’50s without sight, she wanted to do what her siblings were doing — riding bikes, learning to cook and exploring their neighbourhood. it was this drive to learn that would help her find new and developing resources as she began to lose her hearing in her early adulthood.
more than 1.5 per cent of canada’s population (about 460,000 people) are deafblind, according to the canadian national institute of the blind. this rate is expected to grow as the canadian population ages, since advancing age is one of the primary causes of deafblindness.
the concept of support personnel trained specifically to assist those with deafblindness — called interveners — was developed in canada, according to the canadian deafblind association. canada is the only nation with designated intervener college programs.
when penny sat down with healthing, she explained that she had connected her cochlear implants to the computer (which she explains is kind of like headphones) so the interview could happen over zoom. she shared her experiences about growing up without sight, what it was like to lose her hearing in as a young adult, and her passion for cooking.
when did you lose your sight?
i was [born] premature. oxygen exposure was not understood in 1951 when i was born. my weight was two pounds, 12 ounces, and back then not many babies would have lived. so the [lack of] oxygen killed the retinas and, therefore, i could never see.
what was it like growing up without sight?
my parents had vision and they had never been exposed to blindness in any way, shape or form. so they were protective and not very helpful. because of their protective nature, they grieved my loss, but they never really understood that, to me, there was no loss. i didn’t know any better. i just wanted to do what my siblings were doing.
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i was a very outgoing child with protective parents. that was frustrating. i just wanted to do what other people were doing and it took me a while to understand that sometimes i couldn’t do it because it required sight. like i couldn’t ride a bike.
[when i was] a teenager i wanted to learn to cook and do things in the kitchen, but my mom didn’t allow that because she was afraid i’d get hurt. she just didn’t understand how you could do things without being able to see.
and then you began to lose your hearing.
my mother was quite hearing impaired. she had a deterioration of hair cells in the inner ear and i inherited that difficulty. she didn’t have good ways to cope. she didn’t learn sign language. she took paper and pen everywhere with her for people to write on. so i knew how she struggled in her isolation because she couldn’t communicate. quite often i would have to repeat things for her because she couldn’t hear.
my hearing started to fade and that was devastating because i watched her and i didn’t want to be isolated. i didn’t want my life to be like hers. it was frightening, but thankfully, i have a personality that meant i wasn’t going to just sit and take it — i was going to try to figure out what to do.
i started reading about helen keller, and trying to find people who could read braille, so they could write letters to me [in braille] and i could read them. this was before computers — just people sending me letters and i would type back.
i also went to the cnib (canadian institute for the blind) since i knew they had a few deafblind people. they used to have a weekly social, and some of them used american sign language (asl). since they had lost their vision, you would touch their hands to feel the asl. so i learned “manual,” which is a [tactile way of] spelling words. then i had a problem — i could communicate with that group of people, but i couldn’t communicate with family or other people.
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when i moved to ontario was the first time i had an intervention professional who would come with me when i went out and do the sign language. my world just expanded enormously. the other thing that has expanded my world is technology, and being able to have training on how to use it. all this allows me to read. i can advocate, i could learn facebook, i could learn to write documents.
those two things, technology and intervention professionals, are my bridge to the world.
how do you communicate using “manual”?
another person puts their fingers in my palm or touches my fingers and it means a letter in the alphabet. you learn 26 positions on the hand — that’s each letter and you spell words. but your family has to learn it too and not everybody thinks they can. not everybody has the right attitude. this is one of the barriers. i took it personally if people [didn’t learn it] to communicate with me — i felt that they thought i wasn’t worth it. over time i learned that it’s not me, it’s their inadequacies. they’re the ones who think they can’t do it. but it took several years to get that i haven’t changed, there’s nothing wrong with me. and i was still worthy of [people wanting to talk to me].
what is a day in your life like?
i don’t sleep with my [cochlear implants] on, so once i take them off and go to sleep everything is quiet. nothing will wake me up. i have an alarm clock that i can set with my iphone which vibrates so i wake up to vibration if i want to wake up at a certain time. i also have tags on my clothes with braille so i know what the colour is.
i make my own breakfast — cereal or whatever i want to eat. i check my email with a braille display and see if there’s something that someone wants to do today. i can check my calendar by using my computer in a braille display — we wouldn’t even be doing this [interview] if we couldn’t get onto zoom, so computers are amazing. i would not be able to function now without a computer. i used to use the phone, but i prefer emails, so people use emails with me for almost everything. it’s really, really key.
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i guess my routine is pretty much the same as anyone’s. i enjoy swimming, but i have to do that [with someone] — someone to keep me safe and [make sure] i’m not going to swim into anyone. it’s tactile, where if they tap me, that means to stop swimming and tread water or put my feet on the bottom of the pool if we’re in the shallow end.
i also like to shop and find good deals. i like to cook, so finding the things in the stores knowing your prices and having interveners give me all the information about which product to buy and which is going to be the better deal in terms of what’s in it. i really depend on the interveners a lot to do things.
when you cook, what do you have to take into consideration?
it’s very organized. usually i take everything out that i’m going to use, like all the spoons, so it’s all there and i don’t have to run around and try to hunt for anything. when people put things away they have to put it back in the right place.
there are braille numbers on my microwave. i did that myself, but i have to make sure that when i buy any appliance, it’s not heat sensitive so i can put braille [labels] on it. my microwave’s brailled, my dishwasher’s brailled — it’s all set up so there’s nothing i can’t do.
how do interveners help?
interveners are professionals who know sign language. they tell me what’s in my environment. so, if i go into a room, it’s nice to know what that room is like so i feel like i’ve actually been there. if there are any windows, what the seating is like, if it’s a meeting room, what kind of a meeting room and how big is the table, for example. [with an intervener] i can [take part in meetings], because i can’t communicate with more than one person easily. interveners guide you safely, but also allow you to do as much as possible. i choose wherever i’m going to sit, i choose the groceries — i feel the produce and pick the things i want. i do as much as i can for myself — they are just there to assist.
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we also go to the gym. i couldn’t do that on my own because everything at the gym is digital — touchscreen. so the intervener tells me how fast i’m going, and keeps me motivated the same way you would get motivated by watching the screen.
what sorts of assistive technologies do you use?
the iphone alone gives you lots of things because there are alarms you can set, there’s the calendar, and a calculator. it opens up a whole bunch of different technologies. so that’s exciting. and it’s exciting to be deafblind with all this technology because you just have to keep learning. who knows what’s coming in the future. whatever it is, it’s gonna be better.
has anyone ever misunderstood your abilities?
yes. i laugh only because every time i need to go buy an appliance, the salespeople treat me like i’ve got to get the most simplest thing — the cheapest thing on the floor. i like all the bells and whistles and things, it just has to be [a certain way] so i can put braille on it. there are lots of different way to use an oven and lots of different features, but they just can’t fathom that i would really want to spend that much money and that i can actually use it. i try to educate them, but it is a bit tiring, especially with the assumptions they make. i try to not get frustrated, but it’s very frustrating.
how do you handle people who are curious?
some people are afraid to ask questions. but i always try — i have a sign with my interveners that if somebody is watching us — staring at us — but they’re not coming over, she’ll point my hand where they are. and i will say something to them, [like] “excuse me. have you ever seen this before? would you like to know something about it?” and i try to do it so that it’s not a negative thing.
when i first went to algonquin college in ottawa, they never heard of a deafblind person. so i had to educate them in order to be able to get into a course. some instructors just don’t think that you could possibly do the class. but i just think, okay, i guess i have to prove to you what i can do. and just keep at it and be patient.
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there are also some people who just don’t want you there and who don’t want to make it easy for you. you have a choice. you can even keep going, and really dig in your heels and keep insisting or go — leave and try another class at another time. you’ve got to pick your battles because sometimes those battles can be pretty tough. and if you don’t make it, it’s not because you couldn’t, it’s because someone else is not assisting.
what brings you joy?
i actually love advocating — i like to see that i can make change. advocating to me is a game. how do i get what i want? if that doesn’t work, i have to figure something around it. it’s very, very seldom, that i don’t get what i set out to get because i am being realistic and they are real needs. i can change the world. i can change what i don’t like if i choose to. that’s powerful.
i enjoy swimming and being outside, getting to hear birds now. for so many years, i couldn’t hear birds. i just like to know that the sun is just shining up there, and that the birds are out there singing. i might be having a bad day, but i don’t let it ruin the whole day because the birds are still out there. there are still things to be appreciated. i just enjoy life and all its great, great ways of nature.
readers interested in finding out more can check out the canadian institute for the blind, deafblind community services and the canadian deafblind association.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. email info@healthing.ca with your story.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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