This vlog explains what will eventually happen when you don't accept your disability and it's effect on those around you.
Transcript can be read here.
I was contacted about a new upcoming project for a movie that will include the first DeafBlind actor in a movie.
The film is called "Feeling Through" and its a documentary chronicling the journey of that DeafBlind actor and the unique process of bringing this story to life.
They are still in the early stages and working on collecting the funding for this movie.
Here's what the Helen Keller National Center (HKNC) has to say:
"We are proud to be working in association with the Feeling Through team to further our mission of Deaf-Blind Awareness" ~ Sue Ruzenski, Executive Director HKNC
I'm excited about this movie!!
Check out their video and website and help out however you can!
Here's an ASL Video:
I was asked my opinion on a Facebook discussion about interpreting for the DeafBlind, I couldn't believe what I was reading! Here's a rewrite of that post (not naming the group or the source).
"Should DeafBlind people tell their SSP or interpreter that they are sick or contagious? Do interpreters and SSPs have the right to protect themselves and refuse to do the assignment? Even if it leaves the DeafBlind person without communication access and more?"
What were you Expecting?
I have one sentence for y'all!
You signed up for this!
What were you thinking when you wanted to be an SSP or interpreter for the DeafBlind?
An SSP's job is to guide, inform them of their surroundings, people and noise happening, some minor interpreting, and more.....depending on the client - this is mostly hands-on.
As for interpreters if you're worried about getting sick - don't accept the assignment in the first place, or stick with Deaf-only clients. Don't arrive to your assignment only to abandon them.
Many professionals know what they're getting into when they read the job description - nurses, medical assistants, dental assistants, physical and occupational therapists, personal care aides and so on and on. Why not SSPs and DeafBlind interpreters?
The Suggestions & Excuses
Here's a list of some of the suggestions and excuses folks gave:
Let me answer those:
Preparation is the Key
Now, I don't think it should be required that the DeafBlind client tell their SSPs or interpreters that they are sick, but I know many would be courteous to do so. I would personally tell my SSP if I have or had a cold or other symptoms or I would have cancelled any appointments and outings if I'm still sick.
In the case of the Deafblind client needing to go to the doctor or hospital because they're sick - you know where the assignment is and can prepare beforehand (take extra vitamins, wash hands more diligently, or just turn down the assignment).
It's hard to pinpoint that you got sick directly from your DeafBlind client - there are other people, the environment, the bathroom door you touched, the handrail, and so many more. Don't stick it on us eh?
What you're Insinuating
It's my opinion that the fact this discussion even came up just isolates the DeafBlind community even more.
There are approximately 30,000 to 40,000 adult Deafblind folks in the United States, the number of DeafBlind served per year vary from 5 to 80+ based on the 30 states who responded to inquiries on services provided.
5 to 80+ DeafBlind clients served in each of the 30 states!
Out of 30 to 40 thousand "Deafblind" people?
I know that not all deafblind will require SSPs or even interpreting, but still that's a very low number of SSPs. I also know that many DeafBlind are independent and can and are fully capable of managing on their own. Then there's the small factor that don't even know that SSP services exist and rely solely on family for what little information they need and spend the rest of the time in isolation. (Then there's another group who have refused to do anything except mope alone about being deafblind - but not going there).
My point is, those DeafBlind - the independent ones, the ones with SSPs and are out participating in life to the fullest - face a lot of resistance from the hearing-sighted world (and even the Deaf-sighted) and now these people who are supposed to be working for us, our allies, are questioning whether to dump us or not?
Seriously, that's how I see it.
You signed up for this, take precautions and grow the hell up.
Continuing along the same theme as my Crab Theory post. I'll be sharing my feelings on an old phenomenon that happens in the Deaf community plus one recent one that has popped up.
What is Deaf Identity?
I know the Deaf Identity involves more than just the three I showed, but it is the simple explanation. So, let's take a quick look:
American Sign Language is our shared language in the United States and in some parts of the world.
It is NOT "English on the hands" or "gesturing" as the misconception goes.
It is its own valid language with grammar, syntax and all the linguistic rules. Deaf people use ASL not just to communicate but also to tell stories, poetry, jokes, visual vernacular, and SO much more. In short, we cherish our ASL.
Culture is "defined as patterns, traits, products, attitudes, and intellectual / artistic activity associated with a population".
Some Deaf Culture aspects are:
Deaf pride is calling ourselves Deaf - Capital D, as opposed to deaf - Little D.
We do not see ourselves as "broken", "disabled", or "handicapped".
As Dr. Bill Vicars of LifePrint puts it "So we renounce the label of disability and shun patronizing attempts to categorize us as having a "challenge." Not because we don't have a challenge, (we do), but rather because it is psychologically much more comfortable to avoid thinking about it and focus on other things. We go about our lives engaged in the process of "living" and are then confronted by certain Hearing people feel the inexplicable, irrational need to "help" us come to terms with and/or "realize" or "admit" that we have a "problem.""
Now, let's go to the phenomenons happening:
"Not Deaf Enough"
This has been happening for generations, where one feels "too deaf for the hearing world, not deaf enough for the Deaf world". Where one may have been mainstreamed, grew up orally (speaking not signing), late-deafened, deaf but don't sign, have a cochlear implant or whatever reason the Deaf "elitists" feel. (My word choice). These "outsiders" are then rejected, black-listed, or even attacked.
My personal opinion? It's bullshit! Everyone with a strong hearing loss struggle to communicate and participate in the outside "hearing" world. We face the same rejection, oppression and patronizing attitudes from ignorant people. We all face been left out and isolation in a busy crowd at one time or another.
New Labeling - DDBDDHH
Recently there's a "trend" that's going around stating that the word "Deaf" is not inclusive enough and "we" should be calling ourselves DDBDDHH. Which stands for Deaf, DeafBlind, Deaf Disabled, Hard of Hearing. Here's a captioned video explaining more:
First of all, that's a lot to memorize and fingerspell (and say). Look, I call myself DeafBlind because it's my identity as well as being a lot easier than saying "Deaf and legally blind", or to be more PC "I have a combined hearing loss and am visually challenged". Sheesh! Now you want me to say "I am DDBDDHH and have vision loss"? No. Just No.
Think the National Association of the Deaf (NAD) will now have to spend more on bigger business cards and letterheads to change it to National Association of the Deaf, DeafBlind, Deaf Disabled, and Hard of Hearing.
Let's stick with Deaf.
Cherish Who YOU Are!
No matter where you are in your Deaf identity search - still "d"eaf, learning ASL, have a hearing aid or a C.I., or already deeply involved in the Deaf community - whatever, be PROUD of who you are!
Never apologize for who you are as a Deaf person and never apologize for where you are in life. You're responsible for yourself (and your family).
Ignore the naysayers and other crabs (remember crab theory?) and keep learning, keep evolving and stay happy and productive.
In the Deaf community, there's usually some form of "Crab Theory" happening.
First, let me explain what that is:
"The crab theory is based on the metaphor of what happens when you put several crabs together in a bucket. The crabs crawl over each other, trying to get out of the bucket, and in the process, none of them escape because they keep pulling each other back down."
Deaf "Crab Theory" Examples
The "crab theory" is used in the Deaf community to describe the tendency of some Deaf people to criticize or put down the successes or achievements of other Deaf people. It may take several different forms: malicious and negative gossip, grudges, social rejection, etc.
Let me list some examples:
How to Fight "Crab Theory"
First, before you can break it, the Deaf community needs to be aware of it. Often this habit is learned and internalized and is "normal" to do. Others just go with the flow and believe and agree with their friends.
Dr. Jaime Wilson, a Deaf Psychologist explains that a good way to stop crab theory is Mindfulness Therapy.
"Mindfulness therapy will encourage you to have the experience and understand your own feelings...You learn the technical skill of recognizing the feeling before your action".
So, breaking the crab theory mentality starts with you. You need to break the habit of "pulling others down" or stop joining and encouraging others to do it.
Now, I know it's hard for organizations and clubs to arrange workshops on teaching mindfulness, much less find a qualified therapist who can sign. Instead I suggest:
Help Others Out of the Bucket
For those who have crawled out of the bucket - became successful in your life, do turn around and give a helping hand to those in your Deaf community. Offer them employment, internships, education opportunities and more.
Now, do be careful because there'll be a greedy few who will bleed you dry - energy, time, and resources. Do help, but with boundaries.
Successful Deaf people have turned around and helped their Deaf community, here are a few examples:
Now I want to give encouragement to those feeling the pinch (heh). If you're reaching for a goal, have reached your goal or are just being harrassed by others in the Deaf community.
That quote is the absolute truth! If your "group" constantly belittles you, tells you "you can't" or make you feel bad about yourself in any way - are NOT your group! There's a difference between negative critique and helpful advice. Some may try to offer advice how to improve yourself, but if your mindset is negative you'll see that as criticism, so learn the difference and see where you really need to look.
If this gets too much, you may need to find a different social circle. I know this is very hard in a Deaf community, but you got to think about yourself first.
Keep progressing in your life, improve yourself, your situation, your job, your life goals. Any progress is good progress! Think of it this way, while you're progressing slowly - you're still going faster than all the Deaf gossipers still sitting at the table complaining. Hmm?
Here's one last encouraging video:
I'm rooting for ya!
How many of you that have a friend or relative with a disability and when you introduce them to other people it goes like:
"This is Steve, he's [insert disability]".
Right off the bat you let a stranger know the other's person's "faults". (as it feels to us).
This was posted on Facebook a while back by J. Sims:
"Disempowerment by disclosing something personal like about an individual's disability without consent is a thorny source of feeling under-privileged!"
It's that individual's sole right to disclose their disability or not. Many are pro-active in telling the general public what they need for accommodations and we have done fine before you and will continue to be fine after you.
When you do that, it automatically changes the mental perspective of the other person before they've known you. Is that fair really? For example, friends and family would introduce me and go "she's Deaf", I can physically see the facial changes to awkwardness and other expressions and then they're "How....are....you". If you left out that part, they'll just greet you like everyone else and if I missed something I just simply say "sorry, can you look at me when you talk please" and the conversation continues without batting an eyelash. See the difference?
If you or I don't directly point my deafness out, it will become obvious to them, the ask to repeat, the deaf accent, and so on.
Let's turn the tables a bit:
"This is Joe, he's incontinent"
"This is Sue, she has 15 parking tickets due"
"This is Don, he has 3 mistresses"
See how freaking uncomfortable (and no one's business) it is now?
So, stop disclosing things about us without our consent. I know you want to help us, but I promise you, it doesn't.
Any People with Disabilities (PWD) have suggestions for alternate ways around this? Let me know in comments.