Coffee, Canes, and Conversations: Our Unfiltered Thoughts on Being DeafBlind

I wanted to share some of the diverse personal experiences of DeafBlind people across the United States and challenge the stereotype that often compares us to Helen Keller.

I asked DeafBlind individuals across social media a list of questions and am posting their responses.

1. What's Your Vision / Hearing Loss Level?

There were multiple same answers, so I've rounded them up.

• Many said they were Fully Deaf / Legally Blind
• Many others said Deaf / Low Vision
• Quite a few said they have Usher Syndrome

• A few responded Deaf / Mild Vision Issues
• Several reported having Low Vision / Mild Hearing Loss
• Two stated they are Hard of Hearing / No Light Perception
• A few said they are Hard of Hearing / Legally Blind

We are not all "Totally deaf and totally blind" as many assume.

2. What Do You Do For a Living? For Enjoyment?

Each bullet point represents an individual's response:

• I work as a COBOL Applications Project Lead
• I work as a Librarian. In my spare time I build websites and make jewelry.
• Work, Try not to die. Hike Trails. Dance.
• I volunteer with various organizations. For enjoyment I am the organizer of two book clubs and read voraciously. I enjoy trying new recipes and crafts.
• I am currently attending college again. I paint and play with my dogs.
• I live on very low Social Security Disability.
• Disabled, currently reading e-books.
• I'm a student and work as a researcher.
• I'm an ASL teacher, freelance writer, and Administrative Assistant. I enjoy watching TV and movies, time with my family, and exploring new cities and museums.
• I'm retired. I love the Arts, writing, and family interaction.
• I work as a crisis counselor and a customer service representative. For fun, I play with my cats, go for walks, try new foods, go swimming, go to the beach, and travel.

We live diverse and richly experienced lives, and not everyone relies entirely on assistance, or are holed up with nothing to do all day.

This was a comment made by someone when they found out a person was DeafBlind - "Wow, so sad...you can't do anything except sit around all day? being a burden on everyone around you". Yeah right.

3. What Accessible Equipment Do You Use to Get Around? Read? Use the Computer? Cook? More?

• I use a white cane, 3x reading glasses, Zoomtext (magnifies the computer screen's text larger)
• I use a white cane, I have an iPhone and iPad. I have no accessible equipment to help with cooking so I don't cook or bake. I have no magnification equipment available.
• I use a white cane for traveling, I have screenreaders like VoiceOver and Microsoft Narrator. I read using Bookshare.org (available for print-disabled individuals, either in braille or audio). Also, my cooking gear has tactile markings (bumps added to find settings by touch).
• I have a white cane when I'm out of the house, I use Live Transcribe (speech to text app) when interacting with people, I use the computer's built it font settings to enlarge the text on my computer screen, I also use dark mode on my phone and tablet to see better. I use tactile bumps on my appliance settings, I sit closer to the television - about 3 to 4 feet away, and large closed captioning.
• I use a white cane, service dog, or Communication Navigator (also called Support Service Provider - individuals who informs DeafBlind individuals of their visual and audio surroundings so they can make their own independent decisions). I also have an Apple watch and Smart Glasses.
• I have an iPhone and using the Bluetooth feature to learn how to use the VoiceOver function.
• I use a white cane, a Braille reader, tactile dots for the stove, and a CCTV (a monitor that enlarges any item you put under the camera such as print, photos, mail, etc.). I use ZoomText on my computer, and dark Sharpies for writing. I use color-coded measuring spoons and cups in the kitchen.
• I use a white cane, a CCTV, Zoomtext for the computer and a VideoPhone (camera to call other Deaf or a Relay Operator) at home. At work, I use a CapTel (captioned phone that transcribes the speaker on the other end).
• I have a magnifying glass, glasses, a large computer monitor and an extra large TV with bold captions. I can get around without a mobility device during the day, but I have nightblindness. I use extra lighting around me and I sit close at presentations
• I use a white cane and my iPhone to get around, I use VoiceOver on my phone to read and navigate the apps. I use Jaws (a computer text-to-speech program) on my computer to work and navigate the internet. I can't hear water boiling in pots so I use a glass device that rattles at the bottom to alert me when the water boils.

4. Do You Know Braille? Tactile ASL? ProTactile?

Braille, as you probably already know, is the tactile bumps that allows blind and low vision readers to read.

Tactile Sign Language (TASL) is sign language but the DeafBlind person places their hands over the other signer's hands and feels the motions and handshapes to understand sign language.

ProTactile (PT) is a communication and language system designed for DeafBlind individuals. It focuses on tactile communication, using touch to convey information and facilitate interactions. This includes tactile signing, tactile reception, and spatial awareness as well as a philosophy shared in the DeafBlind community.

My participants responded with:

• Braille
• All three, but not fluent
• No on all three
• I know the Braille alphabet, but I'm too slow and I'm learning Tactile
• I use PT as well as work for an agency that teaches PT, I use braille and I don't like TASL
• None due to long distance from the Deaf center or learning resources
• All 3
• I learned Braille but found out I was misdiagnosed and won't be losing all of my vision, so I stopped. I use TASL in dark areas or when the lights are off.
• I'm learning Braille now, I learned PT but I prefer Tactile ASL
• I know a little Braille and a little TASL but I don't use either
• Tactile ASL
• I know Braille and TASL but looking to strengthen those skills and currently cannot find a tutor in my area to help.

5. What's The Top Three Barriers you Encounter? Bias? Employment? Education? Accessibility? Other?

• I cannot drive, no one will hire me, and people think I'm either on drugs or treat me like a child because I cannot understand them.
• Accessibility, Transportation, Romantic relationships

• Communication access, New hearing aids (insurance does not cover them), Not being able to be independent
• Transportation, Stereotypes, reduced job opportunites
• Lack of affordable transportation, job loss due to declining vision
• Assumptions and the idea that others need to accommodate me, but really I'm accommodating them.
• Communication access, environment awareness, personal safety
• Communication with the public, People doubting my DeafBlindness "You can't be both, it's either Deaf or Blind", Stereotypes that I can't work or live on my own or do anything.
• Accessibility is the main barrier. At work I encounter bias from patrons / customers who refuse to write things down for me so I can't help them. Learning sign and comprehending it due to vision.
• Limited to only work with other Deaf or DeafBlind people or only on computers. I have a Masters degree yet I can't find work in my field due to bias. Lack of available interpreters in educational settings.
• Seen as a liability by the public. Lack of accessibility in everyday life that doing ordinary things takes much longer to accomplish.

6. What's The Number One Thing You Want The Public To Know About DeafBlindness?

• Being deaf or blind does not mean I’m uneducated or cannot understand other people and it does not mean I 100% cannot hear or see.
• It’s a spectrum of two spectrums.
• This is something I cannot help. This is me.
• We're not looking for pity, we're looking for understanding.
• We don't suffer from our disability. We suffer from low expectations.
• That I can.
• We're not incompetent - we are trying to survive.
• We are the same as anyone else. We just need some adjustments to fit us.
• DeafBlind can!
• To seek out materials actually written and/or edited by DB people. DB are as intelligent as anyone else.
• We are not all the same. Most of us aren’t Helen Keller. You don’t need to yell at us though either. Just ask us a simple question - like how do you prefer to communicate?

7. Who Is Your DeafBlind Role Model?

Many people grow up having a role model to emulate. I noticed in the DeafBlind community this is harder because of the variety in the spectrum. I discussed this in my previous article -There is No Spokesperson for DeafBlindness.

This is proven by many of the responses I received:

• I don't know
• Don't really have one
• No one
• Not Helen Keller, she had the privilege of having parents who could pay for a tutor to be by her side 24/7.
• Dana Tartar - Smart Woman!
• Marvin Pearson, DB Paralympic athlete.
• I don't have one
• Haben Girma, Julia Brace,Laura Bridgman, Helen Keller, and Danny Delcambre.
• I don't know if I have one.
• Christine Roschaert, an independent traveler around the world and vlogger.
• Tracy Stine (OMG someone said I'm their role model!!)
• Haben Girma

8. Do You think Social Media, Movies, TV Shows, Do An Accurate Portrayal of DeafBlind People? Why or Why Not?

In the past, these roles were played by hearing, sighted actors. We definitely need more representation on the screen.

• Not really. I feel like the portrayal is that you have to have lost 100% of your vision and hearing.
• Not really. Probably because they don’t research on the diversity of DBness enough.
• I don't know
• The one true portrayal of a DeafBlind person recently was in a short movie "Feeling Through". This pissed me off as it was an unfair portrayal of DeafBlindness and showed us as weak, dependent, and naive.
• I don't know
• What portrayal? We are invisible.
• Absolutely not.
• I think the media industry does not do their research enough and hire an expert who can universally educate the public.
• Depends. There still isn't a lot of publicity into Deaf-Blind community. It's getting better but slowly.
• I don't thing I have ever seen a portrayal of a DB person other than with Helen Keller in The Miracle Worker. I can't really answer this
• No. Due to not seeking information from DB and no collaboration with DB people.
• No.
• Not at all. And it’s because they don’t ever ask us or spend the time around us to get how we actually act. TV is filled with so many stereotypes.

9. Anything Else You Would Like To Add?

This is where I allow them to express themselves:

• Having other identities besides being DB doesn’t really help with one’s dating life. It is near nonexistent, that’s just depressing as hell.
• No cause no one cares. I’ve been left behind.
• Deaf people tend to be the least inclusive and accommodating which I think is a cultural problem that needs to be addressed.
• Keep educating the public. Advocating is hard and thankless work.
• Thank you for asking us our perspective. (I think this was directed to me)
• The thing I love about the DB community is there is so much diversity in how we communicate and our needs that no one is left out.
• Most employers prefer to hire Deaf people with full abilities except hearing, rather than DB people. This is due to ignorance.
• We know what we need for access, stop ignoring that and sticking us with useless accommodations because it suits you.

In a Nut Shell

From all these different responses you can see our varied voices, like threads of diverse hues, come together to weave a vibrant tapestry unseen by the outside world.

All we are seeking is the independence to make our own decisions, access to the resources we need to succeed, and the understanding to be treated with fairness and respect.

Let's have a cup of coffee and a conversation.