Today I want to talk about something that annoys the Hell out of me every time I see or read about it - CSJW!
Here's the dictionary's definition:
A SJW or Social Justice Warrior is someone who who expresses or promotes socially progressive views.
"these social justice warriors want to apply their politically correct standards and rules to others' speech"
A CSJW on the other hand is a bit more, here's my definition:
A CSJW or Clueless Social Justice Warrior is someone who expresses or enforces their social progressive views on others BUT have no freaking clue about about the group or people they're "advocating" for.
Here's several stories on what I mean:
You get the idea now?
The first thing people need to learn is that all disabilities have a spectrum! They even range day to day too, one day someone may be feeling good and able to walk around a bit, other days its debilitating and need a wheelchair. Blindness never means "totally blind" - 9 out of 10 "blind" people DO have some type of vision. Deafness never means "totally deaf" - so many variables to deafness I'm not going to go into.
So, before you SRPs (Self Righteous Pricks) decide to accuse anyone faking a disability you should read these books:
Just like the title of the last book I listed....Mind your own damn business! We have enough BS to deal with without you adding to it and ruining our day.
Now, let's talk about the RIGHT way to be an ally or an advocate:
As you can probably tell, this topic pisses me off and if any of you CSJW have a problem with that y'all can KMA (Kiss My Ass).
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.
Yeah, I know I sound like Sheldon Cooper from "The Big Bang Theory", but seriously how many times those of us with handicap parking placards try and find a parking spot and find some idiot in it instead?
The excuses these people give:
One large misconception is that people seem to think that because there is a picture of a person in a wheelchair on the sign, if you're not in a wheelchair you're not entitled to park there.
C'mon folks there are a multitude of reasons those that seem to be able to walk need a placard too. Some are:
Now for those of us who do have a legit parking placard, what can we do when we see people parking in our spot?
One way is to use an iOS app called Parking Mobility - Report disabled parking abuse to your city in less than two minutes. When you see a vehicle parked illegally, simply launch Parking Mobility, take 3 photos and submit. We tell the city and they ticket the vehicle’s owner.
If your city isn't located in the app above, or you don't want the app, the way to report illegal parking is:
Let's make it easy on everyone and park where you're supposed to!
Tell me your parking stories!
For many people when they hear the word "Deafblind" they automatically picture Helen Keller - completely deaf and completely blind.
I'll let you in on a BIG fact - it's a SPECTRUM y'all!
What is a Spectrum?
The Merriam-Webster dictionary defines Spectrum as:
"Used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points."
The Deafblind Spectrum
In the case of Deafblindness, the two opposite points are:
Completely Deaf (no sound registers) --- Hard of Hearing (mild hearing loss)
Completely Blind (no light registers) --- mild vision loss
So,, if you meet someone who labels themselves as Deafblind (like me) it could mean a whole world of things....
Keep in mind there are spectrum ranges within Deafness and Blindness alone too.
It's all individual too, 2 people with the same hearing or vision loss will be able to use it in different ways. For example, 2 people both have the same level of severe hearing loss - one can still comprehend speech with hearing aids or a C.I. while the other can barely identify sounds.
What causes Deafblindness?
There's a wide variety of causes of Deafblindness, either caused at birth or during some time in their life.
Some simple causes are:
Why is Deafblindness Different?
You may now see it as "Deaf + Blind" when in reality it is "Deaf x Blind".
Here's what I mean:
Now think about it...how much of the environment around us everyday is solely tactile? Not much eh?
People who can see and hear often take for granted the information that those senses provide. Events such as the approach of another person, an upcoming meal, the decision to go out, a change in routine are all signaled by sights and sounds that allow a person to prepare for them. A deafblind person will miss these cues because of limited sight and/or hearing and either need someone or technology to compensate.
Now, now..... don't start the pity party!
Many people with deafblindness can and do lead fulfilling lives with relationships, jobs, families, hobbies, adventures and everything else! Sure we need a few adaptations but Pffft!
I've listed some successful Deafblind people in a previous post, but here are some Deafblind folks leading ordinary lives:
This is in BSL (British Sign Language) but you can see the various communication styles and activities.
Now you have a small example about Deafblindness. We can and do everything we'd like to do and find ways to do it.
Some of us talk, some don't.
Some get around fine, others prefer a sighted guide, white cane, or guide dog.
Some know sign and use it exclusively, some don't sign at all.
Some have a positive outlook on life, some don't and want pity and attention.
We. Are. Just. Like. Everyone. Else.
We just do things a bit diffferently, or take longer to do. That's all.
Take me for example, I'm a mom of a teenager and a college student (oh Lordy), I work from home as a freelance writer and ASL tutor, I travel, I watch movies, I listen to music (all the time). The only things I "don't" do is drive or talk on the phone.
If you want to know more about deafblindness, drop me a comment and I'll be glad to help!
Deafblind Awareness week is almost over and I hope you're learning new things about the Deafblind community. If you want to read more, check out the #DeafblindAwarenessWeek hashtag on social media.
Now if you have been following my website or know me - you'll know I'm always expressing that Deafblind people can be independent and live fulfilling lives on their own.
But, there are still barriers to our independence and I'll list a few:
Lack of Support Service Providers
Support Service Providers (SSPs) are trained individuals that accompany the Deafblind person and be their eyes and ears to access their environments and make informed decisions. SSPs provide them with visual and environmental information, sighted guide services, and communication accessibility.
Understand that SSPs do not do anything FOR the Deafblind person, for example - in the grocery store, the Deafblind client wants to get apples, the SSP will guide them to the apples, and the client holds up an apple and the SSP describes it (no bruises, spots, etc.) and the client bags it. SSPs are not Interpreters either - they can interpret small verbal exchanges but not for important events such as medical visits, signing a rental lease, and the like - a professional interpreter would need to be hired.
As I said in the title, there is a lack of SSPs available nationwide. A study done in 2006 estimates there are about 1.2 million people that have combined vision and hearing losses. I couldn't find any current data but in 2006 only 28% of states ahd any level of SSP services. I'm sure this number is larger (Oklahoma just passed a SSP funding law), but I doubt it's enough to cover a million Deafblind clients.
Now, SSPs are not exclusive to Deafblind people, they can be used for Senior Citizens who cannot drive anymore due to sight and hearing loss, Blind hearing clients can benefit from SSPs to guide them around unfamiliar places as well as get audio information on their environment.
So, the solution:
Barriers to Health Services
Many Deaflbind have limited access to quality Healthcare for a variety of reasons. This is a very long list so I'm going to bullet point them:
The solution? Provide better sensitivity training throughout the hospital and medical service community. Provide a Medical School course in the various disabilities and their preferred communication and interaction methods. Have more ASL interpreters and tactile interpreters on contract in hospitals. And finally - stop being stuck up jerks. (My personal opinion). Read more in my article.
General Lack of Access Everywhere Really
There's a huge lack of access for Deafblind people in every part and stage of their lives. I believe the number one cause of this is the public's view of Deafblindness.
As soon as a person finds out someone is Deafblind the majority of the time they instantly think of Helen Keller and "total deafness and total blindness" and forget that Deafblindness has a wide and varied range. The other thought that often occurs too is low expectations - they're hellpless and can't do anything for themselves. I once showed up at a doctor's appointment alone and they asked where my caretaker was. Yeah, I wasn't happy with them.
So because of this attitude, many barriers happen:
One sad fact about all this lack of access and socialization for the Deafblind is that it leads to depression and other mental health issues. It's hard staying positive when there is limited contact with the outside world, and when there is interaction - those people are treating you as if you're incapable of anything.
If you suspect a Deafblind person, or anyone with a disability, of having depression or any other mental health issues, please read these helpful articles
More awareness and training is the best solution. But this takes time, effort and monies that are usually not there. But I believe it starts with the Deafblind people themselves - they need training on empowerment, self-reliance, and how to speak for themselves. Only then can we educate one person at a time, or as a group and wake the public up.
Another solution - stop the "hero" mentality and quench the need to rush to someone's aid (and filming it) for your own self satisfaction or gain. People with disabilities are not your pawns, we are people too and deserve (and should demand) respect. If you see them, simply ask "everything alright?" and if they say it's fine - leave it alone. If they do need help, ask how and help with the one request. Do not assume because they had trouble with one thing that they'll need help with everything else.
I saw this post on Facebook the other day that sums this up perfectly:
I hope I gave everyone food for thought and a change in attitudes.
Now that we got the dirty business out of the way, let's look at the successes of various Deafblind people:
Everyone thinks of this woman first when they hear "Deafblind". She's the first Deafblind woman to graduate with a Bachelor's degree (Radcliffe, 1904) and has written numerous books and many public appearances. The drawback from her success though is that every deafblind person since is compared to her.
He was a Deafblind poet, writer, teacher, and Director of Services for the Deafblind at the "Industrial Home for the Blind" in New York. He got his Bachelor's Degree cum laude from Saint John's University in New York and became the first Deafblind to receive a Master's degree from New York University. He was also Barbara Walter's "most memorable" interview.
Everyone is pretty much online these days and know how to get around on cyberspace - thanks to Georgia Griffith. She graduated cum laude from Capital University, was a music teacher - could play 12 instruments, and she knew at least 7 languages. She single-handedly designed the IBM Special Needs Data Base and pretty much help create CompuServe. For eighteen years she managed some of the busiest and most volatile forums on CompuServe with a membership of thousands. She has been blind since birth and deaf for most of her adult life.
Deafblind from birth she is the first deafblind woman to graduate Harvard Law School. She previously worked as a staff attorney for Disability Rights Advocates and won a few accessibility cases. She currently works as a speaker and consultant.
That's just a few in a long list. Do your own research and you'll find many more.
Hope this helps dissipate the thoughts that Deafblind are helpless and need constant care.