As a person with an unseen disability and friend and family to multiple others with disabilities, I see daily the walls that are put in place by our society that are near impossible to climb. When will we stop “talking the talk” and “walking the walk” and begin to realize that advocacy is far more than just writing policies??
By its very own definition advocacy is defined as any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. Yet it is interpreted/implied as making a true physical/spiritual/literal change by many in the general population, but by definition alone it is just “talking the talk”. When does advocacy truly become action?
Case in point- my mother is deaf, she started out as hard of hearing but, according to the definition of the difference, she is now considered deaf as her hearing aids do not provide her the ability to understand most people’s speech. In fact, many of the sounds we take for granted are lost to her and by her own definition, “removing my hearing aids puts me in a world of silence”. In spite of this fact, most people assume the hearing aids provide her with this ability and even think that if she doesn’t understand them that yelling will open a magic gateway for them! This is so wrong and disrespectful of the information we try so hard to get thru their obviously functional ears that they do not listen with.
We hear so much about advocacy for the disabled yet at every turn there is a crossroads which is less a simple stop gap but an insurmountable mountain with many crevasses, mudslides, rockslides and sheer drops that have no warning signs and quite often feel to be mislabeled the majority of the time. Add in beaurocracy and it now has an ocean of malcontent added in!
Recent occurrences have made me look into the definition of advocacy and why it appears to such a go to phrase. Its use in all forms of media peaked at around 2010 and while it has shown a minimal decline, the use of the word still far exceeds its second peak in 1965 (it’s first peak was around 1876) and yet the obstacles that are out there despite many technological advances!
One of the most annoying yet hilarious is the inability of deaf persons to communicate via new technology. My Mother is as independent as they come with her physical limitations. She insists on doing many things on her own, including contacting various entities to carry on her own private business. She uses email as her main form of communication; she does not own a TTY machine as she does not have a landline, her cell phone she uses to text people in her circle as needed. All of her emails start put with “I am Deaf and cannot use a phone and do not have a TTY machine” and end with “contact me thru email or text at …-…-…. . Yet almost every email return says “We cannot use email as a way of verifying, please call us”…..I am amazed that she does not have a pile of destroyed laptops as her frustration builds with every email.
With the growth of technology one would assume that new avenues of communication would open up making it easier for the deaf to communicate with official agencies. Let me state that, in my own opinion, these agencies tend to cling to the oldest forms of technology such as faxes and TTY and ignore the fact that secure online possibilities could be made! Instead of TTY, direct face to face interfaces can be created with captioning ability to erase the need for obsolete machinery.
Having met and battled with standard practices that declare an inclusive nature for disabled persons, I am constantly told that I am not welcome in because my Mum wears hearing aids. When we inform them otherwise, we are met with obstinance, nasty facial expressions and bad attitude. This has only worsened with the current pandemic’s tightened restrictions with the result of disabled and elderly persons left without interpretors, medical advocates and worse; yet the same facilities seperating these needed support persons from their charges all have “accessibility policies” in place!
The problem with having accessibility policies is the need to ensure that the people within the organization have the training to understand what the policies truly mean! Case in point, many disabled persons are having more issues getting proper medical care during the pandemic. Policies are supposed to allow entry of support people yet they are being turned away and disabled people awaiting medical care have no assistance to get to the toilet while sitting for hours in a room with no one to advocate for them or assist them with simple care tasks most take for granted. I issue a challenge that all people reading this, attempt to use a wheelchair for a day and attempt to use the toilet without cheating, now imagine a person with very limited physical ability hampered by pain or accident and how much harder it is for them to do so without the aide they might normally have!
Advocacy becomes a boulder when it fails to follow thru on its own voice and instead just “talks the talk”. Policies can be created all they want, they look ever so lovely and inclusive when written upon the websites and the walls but unless the policymakers are willing to walk the plank and experience life as a disabled person, if only for a day, they are as useless as the paper and walls and digital media they are printed upon. Advocacy without action and enactment to follow thru only leads to disenchantment, disruption and dismay.
The 3 D’s are corrosive as they wear away at the patience of a group of people who have been waiting for too long to be heard and included thru no fault of their own. Ignorance is no longer acceptable as there has been much education on the “benefits” of inclusion, yet the reality is that accessibility is still very much a fantasy not reality.
The time has come (no, not the Walrus) to stop talking and start doing. Start living by the reality and make as many places truly accessible. If you are clueless as to what accessibility is then put on a blindfold and go for a walk. Learn why those wierd raised dots on sidewalks are and what they mean. Interpret the world as a blind person; try the challenge of being partially blind and the challenges that can bring. Get into a wheelchair and negotiate bathrooms, ramps etc. Find out how exhausting it is to push oneself around! Put plugs in your ears and attempt to lip read and watch people’s reactions when you don’t respond because they cannot see your hidden disability (make sure you don’t try to negotiate traffic!).
Once you discover what it is like to walk the plank of disability you should have a much larger appreciation of the world you are fortunate to live in; where you are not fighting against an unforgiving tide just for access to live as a person with respect and self esteem; to not have to deal with humiliation and shame. Everyone deserves accessibility as a right not a concession or a favour; make a difference and stop being just an advocate and start being an action.