Mark Pickup is a gifted writer who chooses words thoughtfully, methodically and philosophically. So it’s no big surprise to hear the phrase he used to describe his experience last week.
“Remember, it’s called Alberta Aids to Daily Living, not Alberta Barriers to Daily Living,” Mark said.
And he has experience: the 61-year-old Beaumont man has multiple sclerosis and uses a power wheelchair. The power chair allows Mark to engage independently in his community — wheeling down to a skateboard park to watch a grandchild do a new trick, or, to wheel into his backyard on a sleepless night and thoughtfully look at the stars.
Equipment, such as power wheelchairs, which provides provide independence and dignity to people with disabilities is funded by Alberta Aids to Daily Living, known as AADL. For the past 15 years Mark has been approved for a power chair which has kept him part of his community.
But when his TDX-5 power chair “gave up the ghost” in February Mark applied for a new power chair. He didn’t have a choice: the model of wheelchair is no longer in production, nor are parts.
In March the search for a new power chair began with Mark trying a number of chairs out. He found one that fit his needs and made the formal application to AADL.
Then, the waiting game began. Mark waited all summer, and on Sept. 18 — a Friday, at 4:20 p.m. — Mark was called and notified his request was denied.
The explanation, which included such words as “ambulate”, boiled down to this: AADL deemed Mark didn’t need a power chair in his wheelchair accessible house.
“And, they’re right when it comes to my house,” he says. “I don’t. But my life goes beyond the four walls of my house.”
He took to his keyboard where he writes the extremely popular blog Human Life Matters. He told his story and didn’t use pity, but rather showed how his life would change.
Mark emailed media outlets and shared his experience on Facebook.
His story gained traction and his friends emailed the provincial health minister’s office.
On Wednesday afternoon, someone from the department of health called the Pickup house to say the decision was reversed.
“My cynical side thinks it was the immense pressure of Facebook friends and users of other new media,” Mark said. “The Pollyanna part of me says the Director of AADL simply looked at the file and noticed something that was overlooked so he reversed the decision.
“I prefer my Pollyanna side.”
Mark readily admits he is lucky; lucky that his speech returned after the MS silenced it, and fortunate he’s a wonderful storyteller.
But … “What about those who cannot speak for themselves and have nobody to aggressively and persistently advocate on their behalf?” Mark asked. “Do they fall between the cracks? Sadly that has often been the case. People can be reduced to unnecessary miserable circumstance.”
Which raises an interesting point.
We need to continually foster a culture where Albertans — with or without disabilities — to be as independent and active as they can.
Someone is the AADL department probably got their knuckles wrapped for how they handled Mark’s case. And, rightly so.
But let’s learn from this. As a community, we will all benefit.
(Cam Tait is the special advisor for Challenge Insurance)
Source Edmonton Sun