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.