10 Things to Know About Deafblindness
Busting the Stereotypes of Deafblindness
I was born deaf and legally blind. Throughout the years, I've had to explain and correct so many misconceptions out there.
For many people, when hearing the word "deafblind," they instantly think of Helen Keller, the deafblind author.
People need to know that deafblindness is not "totally deaf and totally blind," but actually a spectrum. Some may have low vision and be hard of hearing, others may be deaf and have limited vision, or be totally blind but hard of hearing.
I label myself as a Deafblind person, yet I wear glasses with limited correction and use a white cane. I also have a Cochlear Implant and can identify environmental sounds, but cannot understand speech without close lipreading.
Other Deafblind may hear and speak very well and can carry a conversation on a cellphone or not use a white cane regularly but have trouble navigating in dark areas and at night.
Whatever our variation in hearing or vision loss, here are 10 things you need to know about Deafblindness:
1) Please do not question our ability to see or hear.
A while back all across social media there was a viral picture of a woman with a white cane looking at a smartphone. There were many negative comments and doubts about her "blindness."
As I already mentioned, deafness, blindness, and deafblindness are all on a spectrum of limitations. No two people will have the same degree of loss or even the same level of coping and independence.
We do not need to prove anything to you.
2) If you’re in our space, please do not move things around.
If you're visiting someone with Deafblindness, do not move things around. We need things exactly where we’ve placed them so we can quickly find them again.
There’s no “scanning” visually for it, so if something’s moved, it takes us a long time to find it by touch. Even moving something a foot away, it is still "lost" to me.
This still applies in public spaces such as a restaurant. If we placed our fold-up cane, phone, or purse on a table or chair, please ask permission to move those before touching them.
If you do move something, tell us exactly where you put it.
3) To get our attention, place your hand on our arm or wrist.
Waving in front of our faces may not work, or may even startle us. Tapping our shoulder is alright but it may take longer for us to find you as we still need to scan around to find where you are.
Instead, touch our wrist or shoulder and keep it there. This enables us to “track” you by following your hand up your arm to your face.
Also, identify yourself every time you meet us; you may have known that person for many years, but our vision loss may prevent instant identification. I knew one friend who constantly changed her hairstyle and hair color, which complicated in my identifying her—and I knew her for 15 years.
Please do not play the "guess who" game by asking who we think you are. This is just childish and annoying.
4) Please don’t touch or grab our white cane, guide dog, or mobility aid.
We’re dependent on this tool to get around independently. If you’re walking with us, please don’t grab the cane to avoid hitting an obstacle—that’s the cane’s job! Do not stop or push us out of the way of something. It may look like we’re going to hit a wall, but maybe we needed to find the wall, as it’s a landmark to help us get our bearings.
A guide dog in harness is always working, distracting them by talking or petting can be dangerous for the handler, as the dog might miss an important working cue.
These days there are so many news stories of people with guide dogs being harassed because they were not allowed to pet the dog. It is NOT your dog or even your business, and you're actually putting us in danger and robbing our freedom.
Let us go around about our lives independently and don't interfere.
5) We may move around to see or hear you better.
Sometimes the lighting or noise level is bothering us, so we may switch places or move to a different place. Do not get irritated if we ask you to move or request a different seating area. We are trying to optimize our level of communication with you.
We might shift over a bit to see or hear better—like avoiding glare from lights. Please don’t copy our actions and shift over yourself. It then becomes an awkward dance.
6) Our hands are our eyes.
For many Deafblind, we are "tactile," we get most (or more) information from our sense of touch.
Please let us explore our surroundings by touch. If we’re sitting at a table, we might like to know what’s on it by feeling around. Don’t swat our hands away or start moving things out of our reach. This implies you think we are children, and it is very condescending.
Also, don’t ask if we want to feel your face. It’s awkward. We can feel more character out of a handshake and the way you treat and speak to us than what you physically look like.
7) Please ask us if we need assistance.
You may see a Deafblind person and get the urge to "help" us. Well-meaning people have grabbed us and steered us awkwardly towards a seat, across the street, or another spot without even asking or knowing what we actually were doing.
Please always ask us if we need assistance first.
Don’t be upset if we refuse. We are pretty capable of being independent on our own. If we do need assistance, let us take your elbow or shoulder for guidance. That way we’re a step behind and can feel where you’re going, and if you’re going to go up or down, etc.
Do not grab us, tow us, or force us to walk in front of you like a human shield.
If it’s an emergency, draw a large “X” on the person’s back (Shoulder to waist) or upper arm - this signals to the deafblind person that it’s an emergency and to follow without question. Once in a safe area, be sure to explain why it was an emergency.
8) It takes us longer to do things.
Let us do things at our pace and by our methods.
Don’t get impatient and grab things from us to do it for us quickly, especially if it’s personal stuff like our wallets. It’s much more helpful to aid us in being independent than taking it from us and doing it on your schedule.
For example, drive us to the bank to do our banking instead of saying “I’ll get the cash and give it to you later when I go do errands.”
Allowing us to do things for ourselves improves our independence and confidence, whereas having things done for us diminishes us.
9) Don’t pity or patronize us.
We are human beings doing our best to get by in this world, just like you.
We may be short a few senses, but we’re not short a brain. Treat us with dignity and ask us what you can do to help; don’t assume we can’t do something.
The stigma that we're a burden or a drain on the system is very untrue. Many Deafblind people have jobs, their own families, higher education and fulfilling lives.
The burden is from the general public's stereotyping and negative views towards them as well as lack of accessibility opportunities.
10) Don’t tell us that we’re “inspiring” or “brave”.
That’s annoying and aggravating to us. Would you feel inspired by some average Joe pouring his own cup of coffee? Because that’s all we’re simply doing: everyday average things.
Be inspired by our accomplishments, not our daily lives. Read about people like Haben Girma, a deafblind lawyer, or Dr. Robert Smithdas, who’s the first deafblind in the U.S. to earn a Master’s degree as well as being an accomplished poet, writer, and teacher.
Now that you have 10 tips about Deaflbindness, please continue to learn and help break down the awkward stereotypes and improve everyone's lives in the process.