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Have you ever wondered what it is like to be deaf-blind?  It’s been something I have been curious about since attending a summer camp with someone who is.  Since my post on deafness, deaf culture, and deaf-blindness only scratched the surface, I thought I would ask some of the deaf-blind people I know about what a day in their life is like.  Three wonderful women responded to my call-out for input.  They are students or professionals, single or married, with or without children.  In some ways, their life experiences overlap, and in others they diverge.  But they are all deaf-blind, and they live happy, healthy lives with hobbies, personal preferences, good and bad days.  they have learned – and in some cases are still learning – what they need in order to advocate for themselves, and have been able to communicate clearly.  In short, they are just like you and me. Thanks, Danielle, Tracy, and Rox’e, for being so open with your daily life, your hopes and your struggles.

Danielle

My name is Danielle and I am currently a Junior at Morehead State University in Kentucky, majoring in Elementary and Special Education.  I enjoy reading, swimming, running, and rock climbing.  I also happen to be deaf-blind.  I have no vision with mild to moderate hearing loss, and wear two hearing aids.   My day to day routine is for the most part a typical routine of classes, homework, hanging out with friends, etc.  However, there are aspects of my day that are unique to me as a deaf-blind person.

I use a guide dog as my primary travel aid.  My guide is a Special Needs guide dog who has been trained to accommodate vision and hearing loss.  She does not do specific hearing related tasks such as alerting to sounds, but she does have a lot of initiative in her guide work, which is essential since I cannot always rely on the sounds around me for orientation.  I get more information from what I can feel underneath my feet along with the ability to hold a mental map of familiar areas in my head as I travel.  I do use sounds to orient myself on the days that my hearing is fairly decent but since my hearing tends to change from day to day, how much I use it really depends on the day, time, and how tired I am.

Most people who meet me will be unable to tell that I am deaf-blind.  However, when there is a great deal of background noise such as in a cafeteria, loud classroom, and social gatherings, I usually cannot hear anything unless someone is speaking right beside me.  This also means I struggle to travel independently in these situations and often prefer to go sighted guide with a friend or family member and let my dog heel beside me.   In classes it can often be difficult, if not impossible, to hear classmates asking questions or answering them in the back of the room.  This sometimes can become very frustrating.  Luckily, I am becoming more and more comfortable with speaking up and letting people know when I can’t hear what is going on.   As a college student, I am often required to work in groups in order to complete assignments.  Many of these times it is done in class with multiple groups working at the same time.  This creates a lot of background noise, making it difficult for me to hear my own group and actively communicate and participate in the activity at hand.  As I participate in more and more group activities, I am gradually becoming more and more comfortable with being very clear with my group when I am struggling to hear them.  I find this to be very challenging at times.  Speaking up regarding my blindness has never been an issue but when it comes to speaking up when I can’t hear, I sometimes find it very stressful.   Fortunately, I have had some wonderful teachers who have recognized and understood the challenges I face in this type  of situation and instead of telling me that I did not have to do this, as is not uncommon, they continually insisted that I work in groups.  because of this, I can mostly function and participate in groups without being totally stressed.  I still get frustrated and a little stressed in these situations but I am able to work through it.  I still don’t enjoy being in places and situations where it is hard to hear but the more I’m put in these situations, the more comfortable I am.

Tracy

Tracy is a Canadian, but has lived in Oklahoma for the past several years. She blogs at http://www.deafblindconfessions.com

The bedside table’s light begins flashing and I roll over to turn the alarm off. It’s time to wake hubby and kids up for work and school. In the kitchen I pour juice into a cup until my finger over the rim gets wet and I stop pouring. Everything has a place for easier locating. But if it’s not, I’ll have to slowly look and feel other possible places it could be as “glancing around” doesn’t work for me.

After everyone’s left I go get ready for a morning outing. I apply my makeup by touch, being sure to smooth it all out (sometimes I think I’m just rubbing it all off instead). I lean in really close to the mirror to apply lip gloss. I then gather my purse and hat and wait for my ride. I usually use a white cane when I’m out, but when I have an SSP I rely on her instead.
My SSP arrives, she’s a Support Service Provider (or Intervenor in Canada). Her job is to be my eyes and ears, guiding me around & signing what’s happening in my environment, such as “there’s several people sitting in the waiting area on the left and the secretary’s window is on the right”. They do not make decisions for me or are “helpers/caretakers” as some assume.

At the store I tell my SSP what’s on my list. I hold onto the cart’s handlebar as she guides the cart from the side. She stops at the first item & describes the availability & prices. At the checkout she tells me the total as the register’s screen is too far away or turned around.
After returning home I put the groceries away and start prepping lunch. I have two cutting boards, one black and one white, this is for contrast. I cut light colored food on the dark board and vice versa. I have a brightly lit kitchen for best viewing and a range hood light over the stove, but sometimes I need to adjust my angle. Such as trying to see if the water’s boiling by looking sideways at the water surface. I “tactile” a lot, which is feeling around and “seeing” with my fingers. When cleaning the counters I wash it with a cloth then feel around the surface for any missed spots (bumps or stickiness). Getting around my home is easy as I’ve memorized the layout and its second nature now, but in the long hallways I use “trailing” which is using fingers or the back of my hand to trail the wall slightly ahead of me at waist level. This keeps me steady and straight and finds doorways.

For phone calls, if it’s to someone familiar like my husband or friends, I use a CapTel phone which captions the other party’s conversation through an operator and I read it on the screen. For other calls I use Internet Relay which goes through a Relay operator and she speaks what I type to the other party and then she types what they say to me. If I receive a phone call, or for other noise alerts (doorbell, smoke alarm, they are connected to a lamp that flashes the alerts. If I am away from the lamp or cannot see it, I also wear a pager that vibrates to alert me to the noise.

The kids get home from school. When they were younger, we used to sit at the kitchen table while they did their homework, and they’d ask questions if they got stuck. Now that they are older, I do what many parents do – “Got homework? Nope? Good! Don’t let me find out otherwise!”

Rox’e

Most people are awakened in the mornings – at least on weekdays – by the sound of their alarm.  For some it’s the news on their clock radio, and for others, a shrill insistent beeping which drives them mercilessly from the arms of the land of dreams.  Since I’m deafblind, my alarm is tactile.  Typical alarms wouldn’t work for me, neither would the special alarms designed for deaf-sighted people.  I need a more hands on— or in my case— paws on approach.

My face is snuggled into my warm pillow, when suddenly, the blankets are whipped away and a cold nose is pressed against my neck.  I want to ignore it, I’m still so tired.  I know from past experience, that this is a bad idea.  Before long, three dogs are piled atop me.  The golden retriever is poking me repeatedly with her nose, the lab has removed the pillows from under my head, and the Doberman is stomping on my legs…. Looks like I’m up!

When hearing or sighted people get ready for the day, it’s a multi-sensory experience.  Y’all are champions of the art of multi-tasking.  You eat your cereal while listening to the news and while checking email.

A deafblind life is a more linear life.  I can’t use my braille display to read email while eating cereal unless I want milk in a braille display, a several thousand dollar mistake.  I can’t brush my teeth while listening to the news.  I can’t walk and text.
I get ready for the day just like anyone else, but instead I do tasks one at a time.  I am a wiz at keeping to a schedule, and have time management down to a science.  The Keurig makes my tea while I prepare breakfast for the three hungry dogs.  I slide into my giant claw foot tub smelling of apples and sip a cup of very strong black tea, while trying to wake up.  My clothes are simple— I’m a tom boy and proud of it.  Everything I have matches everything else.  I throw on clothes, chuck my lunch and braille display into my bag, harness up Soleil— she’s the lab— and bribe the golden and the doberman with bones before running out the door.

The seasons are starting to turn down here in the southern U.S.  Soleil starts out almost at a run.  We wiz passed sidewalk cafes— quiet in the mornings.  She stops at the corner and we make the three blocks to the coffee shop in the blink of an eye.  I can smell the coffee, and decide I need a cup.  I tell her to “find the coffee,” and she makes a hard right.  We head to the counter and I hand the barista my phone and small keyboard.  He knows the routine by now.  A triple shot iced latte with almond milk, and a cran-orange muffin.

After that, we are out again, and arrive at the bus stop with a couple minutes to spare.  I set down my backpack, retrieve my braille display from its depths, and wolf down the muffin before loading the GPS app on my phone which will allow me to track the buses movements so I don’t get let off at the wrong spot.  I’m replying to a text from my coworker, when Soleil stands up and hip-checks me to let me know the bus has arrived.  We head for the door and she finds my seat.  I watch the streets go by in braille, and when we get to the right spot, I reach up and ring the bell, so we can get off and transfer to another bus.

Eventually, I arrive at work.  I’m working with N today.  She’s one of my favorite ASL interpreters and one of my best friends.  I tease her about her hair, after I check to see if she’s changed it.  The woman has hair ADD and is always doing wild and different things with it.

I use ASL tactually.  I place my hands atop the signer’s hands and touch them to feel what people are saying.  People ask me if emotions can be conveyed this way and I can say for sure YES!!  I have seen crying hands, angry hands, laughing and teasing hands.  Hands can scream, and they can also whisper.
My Orientation and Mobility class is going to the grocery store today, so we all go back out, load up on the bus, and my interpreter and I spend the next two hours stalking my clients through the grocery store to ensure they are safe.  The interpreter tells me things about the client’s use of their cane, interactions with the public, facial expression, etc.  This way, I have all the information I need to be an effective teacher.

Back to work we go, and it’s time for a two hour meeting.  Each person in my department introduces themselves with their sign name.  This is commonly a name that mixes a sign with the first letter of a person’s name.  My name is Rox’E and my sign name is the “R” handshake on each cheek because I have dimples.  Because tactile interpreting is so demanding, I have two interpreters for long meetings.  By the time this one is over, I’m exhausted, because while there are two interpreters, there is only one of me.

But there is no rest for the wicked!  It’s time to make groceries.  Many deafblind people use the services of an SSP.  SSP stands for Support Service Provider.  This is a person who acts as a Deafblind person’s eyes and ears in public.  Some SSP’s do sighted guide, others just explain the environmental goings-on.  Soleil has the guiding down, so my SSP is mainly responsible for driving and for describing things.

N is also my SSP.  We load Soleil into the back seat of her car, and after a quick stop for caffeine, we are off.  N’s newest musical craze is a woman called Meghan Trainor.  She sings a song called All about the Bass.  It’s not about fish, as I first thought, but instead is about the low sounds of music, and butts figure in there somewhere, but don’t ask me how.  N and I drive around, windows down, and she is teaching me the lyrics to All About the Bass in ASL.  So we drive and sign until we arrive at the store.

When we arrive, we get a copy of the sale paper, and she converts the written word into ASL.  She makes sure to point out all the bakery items on sale, and tells me that the muffins look good.  She’s bad for my diet!

We wheel the cart around, and as I’m picking out squash, some woman comes up to us and starts in on a long speech about me and how I’m so inspirational and that “The lord must have sent me to earth because I’m his special angel.”  I really try hard not to roll my eyes or to make a bad face but it’s a lost cause.  We make an escape from weird angel lady and head for the ice cream.  Someone stops to say that ASL is beautiful.  My SSP was just explaining to me about the kinds of toilet paper they have, but OK, beautiful toilet paper it is, then!

Eventually we make our escape, load the stuff back into N’s car and head back to my house.  N sticks my groceries on my porch, and I go inside to let the dogs out to take care of business.

While putting away groceries, I notice that N has gotten me a larger size of frozen peaches than usual and that she has managed to forget to put my muffins on the porch.  I bet they’re still in her trunk…

After letting the dogs back in and refereeing a game of tug between Soleil and Laveau, the doberman, I read email, make dinner, do the chores people all over the world do before bed, and crawl between the sheets.  My braille display is next to me, and I’m excited to continue my reread of Harry Potter for the fiftieth time.  My dogs nestle around me, Mill’E the golden on my feet, Soleil sharing my pillow, and the Doberman in her crate because snuggling is for lesser mortals.  Tucked in, surrounded by dogs, I fall asleep, readying myself for the day ahead.

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