For someone who cannot see or move like us, this is Saturday for them too. All over the world, people of all sizes, ages, races and genders with disabilities wake up in the same world as everyone else – every day, not just on this date, the International Day of Persons with Disabilities.
Whether disabilities are profound physical or mental issues, whether they are obvious or invisible, we all run the risk of that possibility too.
We are not immune.
While most people with physical, sensory or cognitive disabilities have that determined in the womb or as a byproduct of illness, everyone who lives is at risk of acquiring a disability through accident or illness.
Today is one for pausing to recognize and celebrate people with disabilities everywhere. Governments and corporations make announcements, make donations, and launch initiatives. But then the next day arrives, it’s just another day for everyone, but for people with disabilities and their families, today is just another day of coping and managing with something that never takes a day off …
Many years ago, I had my eyes opened by people with vision and hearing impairments because each group seems to divide around what one can only describe as ideological lines.
There are deaf people, and there are hearing impaired people – and they don’t see eye to eye about many things either. And the blind and the visually impaired community don’t see aye to aye a lot either.
If someone who cannot see well, or at all, feels they are disabled, then they are.
Realizing many see themselves as normal people who cannot see is difficult for many of us to understand.
If someone is deaf, especially those deaf from birth, they see their deaf community as normal and resist mightily those who wish to install a cochlear implant in their child so they can hear.
Hearing people typically react strongly to this because most of us cannot understand why someone who cannot hear doesn’t want to hear. But telling people in the deaf community that they are disabled will offend many, and strongly so because they see themselves as someone who does not hear while living in a hearing world.
I don’t consider myself disabled at all, yet I am a non-smelling person living in an odor-filled world where nearly everyone can smell. I don’t see myself as any different from anyone else. I have a body and a brain – and if part of me doesn’t work as well as anyone else, I don’t look for help or sympathy.
Neither do most people with a sensory, physical or cognitive disability want sympathy or pity.
What most people with disabilities want, from my experiences, is dignity. Yes, they want the support of services and resources to fulfill the government’s obligations to help those who need help – and it would be great if they didn’t have to fight for it so much, and families will always agonize for their disabled children for three reasons, and it has been a profound learning curve for me to understand them.
The first is coming to grips with the reality of what a child will miss out on in life, things they cannot do – the expectations of everyone, and of every parent, of their children living a full and complete life.
The second is the need to be there as a parent, caregiver, and advocate – to struggle with bureaucracies for services, funding, attention, and recognition of their child as a unique person with rights and liberties like everyone else.
The third, and in this regard, I’ve seen little progress or innovation in my more than forty years of involvement in and around this community of ‘families and advocates’ for people with disabilities, is the transition that happens at two stages.
The first is when the child becomes an adult – because so many changes, and it goes from bad to worse from one jurisdiction to another, from compassionate to clumsy, how the care system and supports from the government stumble and fail as much as they succeed in helping the person become the one in charge – most often in concert with a legal guardian or authority figure.
But, at that same moment, the caregiver and advocate parent moves into a different role, one that is often dismissed systemically by funders, while that parent then faces the hardest reality of all.
That part of this third element which is the hardest of all is realizing their child will likely outlive them, or at least outlast their ability to play an active role, with a daily agony of what will happen when they pass on. Most of us raise our children with the expectation that we are raising little adults who will one day run the world and grow up to do just that. Look at any elementary school playground, and you’ll see the people who will run this world in thirty years …
But the parent of a child with a disability, along with their siblings, plays a role and fights battles every day of the year that deserves far more than one day of recognition every year – they live it every day. Yes, a very large number of people with disabilities live full and ‘normal for them’ lives, but they do so with the odds stacked against them at every turn.
The measure of a society is how well it cares for those who cannot care for themselves, just as the measure of a parent is how well they care for those who depend on them.
Everyone wants to be independent and free, and we can never be that if we leave people behind without their independence and freedom protected, supported, and celebrated their entire lives, whether or not their parents are guardians are around to help them fight for their rights and independence.