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.
Following up to yesterday's post about the bad wording and treating the deafblind man as a prop, I came across this article from The Mighty that is really helpful to remember for the Deafblind as well.
And if you notice #10 - I do not exist to make you look awesome.
- Don't make a big show out of helping me to look like a hero.
- Don't talk about me patronizingly - Look at what she can do.
- Don't treat me like a trained seal - Show everyone what you can do.
One more thing that's the bane of many people with disabilities - condescending praise or "false praises" - "good job on (mundane task)", "Woooow that's great you can do that!", "- it's the tone behind the message, you get the idea?
This happens so many times (I've lost count myself) that many are veryal and leery of compliments as we're not sure you're being genuine or not. As one online friend said "I've been patted on the head so many times that one of these days I'm going to bark 'Woof'."
So, next time you meet a Blind, Deaafblind, Deaf, or Disabled person - treat us like everyone else - it's that simple.
This week in June marks Deafblind Awareness Week and a Facebook post that spread all over social media last Friday has me upset and irritated.
Here's the Facebook post:
The wording throughout is very patronizing and "ableist" and painted the deafblind man as totally helpless.
"The gentleman next to him did his best to assist him with things like opening coffee creamer and putting it in his coffee" - I'm sure Tim could handle his own coffee - many Deafblind can do many things independently - cook, clean, and even hold jobs.
"When Tim (the deafblind man) made the attempt to stand up and feel his way to the restroom, his seatmate immediately was up to help him" - I've traveled alone on airlines thousands of times, common sense dictates the bathrooms are at the back or the front, walk to the where the seats run out (or for some people - follow the smell). If the door is locked, wait til ya feel a burst of air from the door opening and then go in. The wording "attempt to" paints helplessness.
"someone suggested paging to see if anyone on board knew sign language. That's when this lovely young woman came into the picture....For the rest of the flight, she attended to Tim and made sure his needs were met" - IF the wording was along the lines of "an ASL student kept Tim company and chatted with him for the rest of the flight" GREAT! I wish more people learned ASL and attempted to communicate more, BUT - "attended to Tim and made sure his needs were met" - Is she his nursemaid now? See how patronizing that sounds now?
"I don't know when I've ever seen so many people rally to take care of another human being" - so ableist - look at what WE did for the poor man.
I'm not saying never help someone with a disability, but don't you think if they got there on their own they can manage to go on their own? Just assume they're alright until you actually see them look confused or like they actually need help.
the oooohs and awwws of this post was just over the top.
Here are some quotes from other Deaf and Deafblind in response to this as well:
"A large portion of the Deafblind community is annoyed by this classic example of inspiration porn. DB people fly independently all the time and have various ways to manage themselves. This was hard-fought when for years (and sometimes still) we were not permitted to fly alone."
"So often, help is forced upon us that we didn’t ask for or need so that people may congratulate themselves, but it perpetuates ideas of low expectations and ablism that affects other aspects of our lives, such as employment, independent travel or housing."
"She took a story that was not hers to tell and made it viral. If she simply posted something about being frustrated about lack of accommodations, might be different. If HE posted about how people were cool about helping, very different."
"These words seem nice but actually disenfranchise people. We should be angry that a grown man was infantilized. Furthermore, this story is written like he is a prop not an active participant in this story. It’s not that kindness and help are bad things but the interaction should be a reciprocal interaction where power is shared equally."
Of course I received negative responses from people for my comments such as:
"Your awful!! My mom is DEAF BLIND and there is "NO ONE" to help her but her children. I have not read the story but I believe more people need to be aware of this type of situation. It was very kind of the young lady to help with the communication barrier." - I was commenting on the wording used and not about the help offered.
"I loved the story and I'll remember next time I ever meet you not to help you or give you company. You're on your own." - *hat tip* that's fine 'cuz you missed the point.
"I doubt you'll read this or hear it....but I hope someone rearranges your furniture when you're having a bad day." - LOL!! My favorite Helen Keller joke, thanks for the laugh.
So, it was not the acts of the people on the airplane or the wonderful ASL student helping out and chatting, it was the wording and "inspirational porn" feel of the post that got me upset.
When will the world learn that people who are Deafblind are fully capable of leading their own fulfilling lives and we don't need your pity, patronizing attitudes and be objects for your "good deed" checklist.
If we ask for help, just help us with what we asked for without the assumption that we're incompetent in everything else.
Children spend quite a large amount of time playing while they grow up. In order to make this safe and easier to monitor playrooms were invented.
Playrooms are not only beneficial to the kid but also to the adult. Firstly, toys won't be scattered around the house making it hard for your child to locate his or her toys and there will be less injuries to the adult from stepping on Lego blocks.
A playroom is your child's personal space, a place where they can daydream, explore their imagination and bask in the simplicity of being a kid, with lots of toys of course. For blind and/or deaf children, most of the same rules apply.
Children with disabilities are not their disability. They have the capacity to do so much more if they are equipped and taught properly.
Deafblind cases are different for each child. Often more than not, the deafblind child doesn't have complete blindness or complete loss of hearing. It is important to know that there are several ways a child becomes blind and or deaf. One of such ways is meningitis. Another cause is the Usher syndrome, this syndrome causes hearing loss and a progressive vision loss. It is often inherited. Deafblindness can be caused by CHARGE syndrome, premature births, prenatal or postnatal complications as well as some other causes. When creating or remodeling the space for a child who is deafblind it is important to know the following tips.
1. Keep your child involved - Your child would definitely appreciate it more if you included them in the decision making process. After all it is meant to be their playroom so it is only right that you get their input on what they'd like.
2. Focus on particular aspects - There is probably a particular thing that your child loves to do, maybe it's playing with paint, of course you have to be around to ensure safety. If your child loves painting it'll be preferable to have a playroom with lots of blank spaces on the walls or sketch pads. A means of self expression for your child.
3. Switch it up - Don't have the room looking drab and boring. Let there be a mixture of colors in the furniture and decor. Not all deafblind kids have complete vision loss. Some can still see faintly. You have to use this to your advantage. Paint the walls a mix of your kid's favorite colors.
4. Have different types of toys - Unfortunately the market for toys that cater to deafblind children are rather slim and quite a lot of these toys have to be made my one's self. It is important to focus on sensory toys. Toys that focus on touch. The toys that utilize the other senses. One option is puzzle games, these games should not be complicated or too hard. They should keep your child engaged not frustrated. A previously conceived idea from Perkins School for the Blind is making holes in a shoe box and then trying to stick straws into it. Another idea from the same people is a lid game. In this game you gather three to four containers and take off the lids. your child then has to figure out which lid fits which container. You could also attach different materials to separate strings e.g a piece of nylon, cotton, silk etc. and then have your child match similar materials to one another. These can easily be made at home without spending any money.
5. Have comfortable furniture - If the furniture in the playroom isn't comfortable it'll be unpleasant for your child. You should get comfortable furniture. For example, bean bags.
6. Storage - Storage is extremely important. You would want to invest in open cabinets that your child would easily navigate so that cleaning up will be easy after a fun session. This will keep the playroom clean and safe.
7. Try to change the toys - After a while, your child will get bored so it's important to have new games on hand. You could just increase the level of the previous games, making the puzzles a bit bigger or decrease the holes in the shoebox. Because your child is growing and learning everyday there should be changes in the content. If your toys are purchased you could donate it to another child who needs it.
8. Install a camera - This is an extremely important part of your playroom. There must be a camera that you can easily watch it's footage. You should be able to stream it on your phone as well as computers if you're in the house. It always pays off to have a certain computer that constantly shows the footage of what's happening in case you're not in the playroom at that moment.
9. Purchase some stuffed animals - Some stuffed animals can speak and as they speak they release a vibration in their body which comes from the chest, this is usually where the voice box is. This stuffed animal should not be a large one in order to avoid suffocation or any other incidents. Stuffed animals appeal to the sense of touch.
10. Homework corner - Finally there should be a homework corner. Generally, it's easier for people to work when they are free from distractions or in a “work” area. It is advisable to cut out a little part of the room. It would contain a chair and a table. This will help your child get in the mood for work. Most deafblind children adopt set routines. If your child recognizes a particular area as the play area they won't want to do any work in the play area. If your child is home schooled then this is very important.
Setting up a playroom for kids with disabilities is different in each case especially for deafblind children because the cases are different. Your child is an individual so these tips have been generalized. For children with other disabilities, the key is optimize the playroom with different games and toys that will be safe and enjoyable for you and your child.
Author Bio: Thomas M. Strother is the blogger at spreaders.com which specialize in making spreaders and dump trucks from last 24 years. They provide quality products in agricultural areas like lime and fertilizer spreader, construction and other needs from tailgate salt spreader to litter spreader. They make sure that customer requirements are full filled.
Recently, I went to a Job Fair hosted by the Department of Rehabilitation Services Visual Services Department (for clients who are Blind or have Vision Loss). I'll leave out the location, that's not important, but it was a disappointment to say the least.
I’d say there was only about 8 tables altogether:
There were no local Clubs for the Blind, other agencies, local big businesses, and so on.
I've also been to a few Online job fairs in the past:
One was for people with various Disabilities:
Another was specifically for Work from Home positions for People with Disabilities:
* Applicant 1: Hi, I'm looking for a programming job, I have a Masters in (yadayada)
* Applicant 2: I am seeking a job in Arizona, who can I talk to about availability?
* Recruiter 1: Hi Applicant 1, great qualifications, please check our job board on our website www.abcxyz.bs
* Recruiter 2: Hello Applicant 2, yes we have jobs in Arizona, please check out our job board at www.abcxyz.bs
And around and around that BS went. Why the Hell do we wait for this event just to be redirected to a job board on your site? We could've done that ourselves ages ago!
So, here's what I think are the five essential qualities of a successful job fair should be:
1. Audience Focused
I think this is the most important element of any job fair.
Decide who is the focus target group you are addressing. Is it for Youth, People with Disabilities (in general or a specific group), Veterans, a certain career, or a location?
Once you've decided this it's easier to focus your research and invitation list. Some "generic" job areas are acceptable - having administrative and management job centers at a computer programming fair. Don't have a criminal and convict re-entry program at a job fair aimed at blind and vision loss.
Invite more companies than you plan on. This way you'll have a fail-safe number of recruiters showing up as there's sure to be a few that decline the invitation. This way you're not scrambling to fill space and ask your friend to bring her direct sales products in. If they all accept the invitation, that's even better!
2. Include Local Organizations, Clubs and Agencies
If you're hosting a job fair focused on Youth, or people with Disabilities and such, please include the local specialized agencies as well.
In the instance I mentioned above, the job fair did not have the local Council of the Blind, or other local agencies for vision loss.
Why should you include these? They'll know specifics your focus group may need for job accommodations, may have a mentoring program, other unrelated training and such. These organization representatives may also help facilitate with you and other company recruiters and share information to the recruiters that may not understand disability needs, and so on.
3. Educate the Recruiters
If you're hosting a specialized job fair, put together a information package for the invited recruiters. Information such as dos & don'ts, correct lingo and language, and so on.
Nothing like going to a Job Fair for the Deaf and have one recruiter enunciating all his words at you. A BIG no-no in the Deaf community.
Make it comfortable for both parties.
4. Offer Workshops and Seminars throughout the event
Have a workshop or seminar on how job seekers can improve their chances of gaining employment.
5. Have "Actual" Jobs Available
As I mentioned about the Online Job Fair, potential applicants were directed to the website for job listings and did not have actual jobs in mind.
The on-site job fairs I've been to were mainly "resume collectors" and "we'll let you know if you're a fit". Other attendees offered more training - as a friend said:
"Job fairs should be called "Training Fairs". They all see to offer training to get a job, but seldom do they actually hire anyone! "If you do this training, you'd be more hire-able in that field..." Big whoop!" (Another disappointed attendee)
So, those are my 5 essential qualities of a successful job fair. I hope to actually attend one that I will enjoy.
Any further suggestions can be put into comments and if there's enough I'll post a follow-up.