A day in the life of…

Alt text: This photo depicts Jennifer Hawkins with 13-month-old Ebony (her dog) in their apartment. Jennifer wears a tubie backpack, although it might not be visible in the image. The backdrop features a small indoor greenhouse, with a large bookcase of braille books beside it. The top two shelves hold larger volumes, including the braille Bible, which spans 25 large volumes due to braille’s increased spatial requirements compared to print.

 

The author of this personal essay, Jennifer Hawkins, is totally blind and deaf with bilateral cochlear implants. She received her high school education from Illinois’ Hadley School for the Blind and is currently training to do accessibility testing for digital content.

 

The first thing I do in the morning is let my dog go potty. I take her outside, feel her circling through the leash and know when she stops to squat. Placing a hand on her back, if it feels like she is sitting with her tail held high, I know it’s pee. If her back is very rounded, I know it’s poop and I will place my toe near her tail. When she’s done, I put my hand inside a pickup bag and feel through the bag in front of my toe. That way I can gather up the poop into my hand without touching it and turn the bag inside out.

I love animals of all kinds. Growing up, I had many turtles as pets – so my nickname is now Turtle. I also had a horse as a teenager and enjoyed volunteering at my local Humane Society, where I took care of a rat. I loved that rat because he would ride on my shoulders and stay there all day. Animals that like to stay with you are more enjoyable when you’re deafblind than animals that run circles around you, out of your reach!

My first dog was a program-trained guide dog, a Golden Retriever-Labrador cross named Farley. My second dog, a German Shepherd named Ray, was sired by a friend’s dog who I loved very much. When she offered me a puppy, I jumped at the chance and we trained him together.

My current dog, a mutt named Ebony, came from an acquaintance who couldn’t keep her puppy anymore. I’m training Ebony myself and, based on my experiences, am writing a book on naturally raising dogs, incorporating my experiences as a deafblind handler.

 

I was born deaf, although I didn’t totally lose my vision until I was five years old.

 

I do remember seeing a few things. Clear blue sky, my grandparents’ camper and, perhaps the most memorable of all, a baby elephant being born at a zoo in Chicago.

I learned sign language when I could still see. When I lost vision, my mother switched to tactile signs, but I could not understand her for three months. In order to do things without vision, I had to first learn how to feel. I remember a book with tactile graphics in all kinds of shapes and textures. No words, no Braille, just fun shapes. From this, I began to understand more details by touch and then other skills followed.

I have one older brother who is also deafblind, but no other known family who are. I was also born with a colon condition called Hirschsprung’s, which led to me having occasional bowel obstructions and an ileostomy bag.

My appetite for my favourite foods was lost when I could no longer see them. It took time to learn to enjoy them by smell, taste and texture – not by appearance – and with perseverance, I did. But I always struggled to maintain weight, even when eating well.

 

 

Alt text: This photo captures a moment of companionship and training. In the foreground, Ray’s breeder stands alongside 9-month-old Ray, while Jennifer is pictured with their 8-year-old dog, Farley, who is still actively working. Another dog, belonging to a friend, is also present. The friend, who took the photo, isn’t visible, but she shares a significant connection with Jennifer, having obtained their dogs from the same program. The trio embarked on a lunch outing downtown as part of Ray’s training and public exposure, coinciding with the friend’s visit from New Mexico. The user’s cochlear implant externals are visible in the image.

 

In May 2023 I got a gastrostomy (G) feeding tube – and it’s been life-changing.

 

I’m now gaining weight. I’m also able to eat a little orally, without the pressure of needing to eat to live, which is especially meaningful for me as, without vision or hearing, tasting and feeling different textures while chewing food is one experience I can still enjoy every day.

Having a feeding tube has not been without its frustrations. Pumps are generally not accessible to those of us who are deaf, blind, and deafblind – although they easily could be, if they were designed to save settings, have tactile buttons with single functions, and vibration and flashing light alarms in addition to sound. Having the ability to control your pump from your phone would add another layer of accessibility.

In my experience, only the EnteraLite Infinity pump is accessible – and only partially so.

 

I’m on 22-hour continuous feeds and have trained Ebony, my service dog, to alert me when my feeding-tube pump alarms go off.

 

This is especially helpful because without my cochlear implant sound processors, I can’t hear anything at all – and I usually take them off at night.

I live independently with Ebony in a small, downtown apartment. I keep in touch with my friends through twice-weekly meetups and text messaging on my iPhone, which has a screen reader, VoiceOver, that sends what’s on my phone screen to a Bluetooth Braille display so I can read it.

I’m currently training for a career in web accessibility testing. Ninety-nine percent of websites and apps are not coded with accessibility in mind, which is very sad because if designers incorporate it during the coding phase, it’s not difficult to achieve.

 

A lot of my ability to maintain independence depends on remembering things.

 

My feeding tube pump has nine buttons and I’ve memorised what each one does. I use the middle-left button to prime my bags, placing a finger over the end of my tubing and waiting until I feel liquid come out, then hitting the bottom left button to run the feed.

Since being diagnosed with a rare inflammatory condition, lichen planopilaris, I’ve needed to follow an autoimmune protocol (AIP) diet. My dream is to create a line of AIP-compliant formulas, called Nourishing Inclusion, as no existing commercial tube feeding formulas are AIP-compliant. For now, I make my own blenderised food.

I do all of my cooking by smell and touch. My motto is, don’t use a spoon if your hands will do! Cookies are hard for me to form, so I use a mini-muffin pan to make my famous AIP chocolate chip cookies.

Most days I visit my mum in the late afternoon. She has a large, fenced yard where I can let Ebony run and play fetch, be with my mum and listen to the birds. We walk in the park, too, and have a project to identify all the trees in that park, one tree at a time.

I like to hike, explore caves and rock climb. It’s my way of feeling the natural world and connecting with the earth.

 

I haven’t been able to do that for a while as I became very weak from lack of nutrition, but now that I’ve had a feeding tube for almost a year, I’ve regained strength.

 

Recently, I’ve taken to gardening and bonsaiing. There is some thrill about planting a seed and feeling it break through the soil then develop into a mature plant that never gets old. This is one hobby that doesn’t require sight or hearing either – unless you’re working with a cactus, of course!

There are so many different textures and smells to enjoy in plants, and flavours, too, if you’re growing edible plants. The rope plant, a type of hoya, has very interesting leaves that grow in a tight rosette and climb like a vine. Lamb’s ears and African Violets have soft velvety leaves. Herbs like basil, thyme, rosemary and oregano add delightful scents. I could go on and on.

I like to end my day with reading a book – sometimes in Braille from Bookshare or BARD [Braille and Audio Reading Download], but most times I prefer listening to audiobooks. Since I use my hands for everything, they get very tired and need a break. Ebony sleeps against my legs through the night.

Written by: Jennifer Hawkins, edited by: Melanie Dimmitt