Poverty worsens challenges of disability

Jobs Unlimited: A place to grow possibilities

According to a New Brunswick Association for Community Living statistic, approximately 22,000 people live with an intellectual disability and 70 percent of those live in poverty. The NBACL works to ensure that, with the support of their families, this group has the option to choose supports they need to live meaningful lives, participating in their communities as valued members.

I became acquainted with one of their members, Lorraine Silliphant and her son, Ralph, back in the 70s when they lived in the same apartment complex as I and my 3 roommates — Wilmot Park Apartments. Those were the days!

Fast forward several years when I was asked by a former STU classmate working with Health and Community Services if I’d be interested in taking on one of their clients, Susan, who lived with an intellectual disability. She had returned home to Fredericton to finish her education at Fredericton High School after living and learning at Bonny Lee Farms, a private school in Nova Scotia.

After that structured learning milestone, the goal was independent living; but first, enhancement of life skills was in order. That’s where I came in. It was a learning process for all of us, especially Susan’s Mom, who early on was overly helpful. That’s understandable when one’s child with challenges is testing the waters of independent living. Moms have their own challenge of letting go so she can grow – my own mother went through that.

During her time with me, I connected Susan with Jobs Unlimited. At that time, Brad Slauenwhite was the Executive Director and his commitment to providing quality services and programs was second to none. His presence is still very much felt in Fredericton and beyond.

Susan and all thrived in that environment as they prepared to settle into community life, gainfully employed upon acquisition of requisite skills for jobs to which they’d be assigned. Susan soon found her way to Zellers in the Brookside Mall. From time to time, I’d stop in to say hello, sitting in my wheelchair at one of the restaurant’s dining tables. I reminded her that she was at work and we couldn’t have a long visit; she was getting better at time management. It was evident she enjoyed the job and the interactions with fellow workers who took her under their wing. That’s as it should be. In that environment she flourished.

It had been my hope that persons with intellectual challenges doing the same job as another without disability would get the same wage. Alas, that was not always the case. Certainly, many people like Susan have subsidized situations where the government provides financial incentives to employers. Would she and the rest have been hired without them if they were qualified based on ability? They should be. Equal pay for equal work levels the playing field and provides a hand up out of poverty-line living. Susan never thought about things like that; not many in her situation did. In a way, the ‘system’ took advantage of their naïveté. Susan had an active, involved life living in her apartment in Fredericton, surrounded by a network of friends and her family who appreciated and loved her for being her.

In January of this year, Susan Shore passed away at the age of 60, leaving a strong legacy that will forever shine a light on the needs and wants of people like her who seek to find their place to live in a community where they can go to work, have a safe place to hang their hat and enjoy activities in the community that enrich their lives; all good things, important to health and wellness.

With her passing, I recognize that many support people are aging out of their ability to meet the demands of providing daily or even weekly interventions on behalf of adults living with challenges to their day-to-day.

It’s critical that the ranks of volunteers be increased to fill in the gaps. High school or university students who have interest in teaching, nursing, social work, or medicine, regardless of speciality, have a place in the lives of people like Susan, who can teach them far more than they’d ever learn from a text book. Being a social inclusion volunteer is a win-win!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Exercise to take charge of your health

Greg Southam/Postmedia

Before I got the whole walking thing down to an art form, I was a waiter. Growing up and into disability, I functioned within the time frame of others; parents and siblings, to accommodate my needs. Waiting! Now, I control the schedule though am fortunate enough to have folks available who will do things that I am no longer able to do for myself or on my own.

But they and I have one thing in common — we’re all subjected to the dreaded ER wait times. No one is immune. Precursors to time spent waiting for surgery is the time spent waiting in an ER to be treated for that condition which led to the need for surgery or for time spent in Outpatients waiting for tests, or time spent waiting in a doctor’s office for a consultation that may not have enough minutes to discuss all we think the doctor ‘must’ know. COVID has altered the landscape of care.

For system efficiency, those who deliver health care services and the recipients of such services must work together, which ultimately translates into money saved for both. These COVID times dictate that we must change the way we view and treat services like those provided in the hospital setting, notably in the ER. Not every ‘complaint’ requires an ER visit. Besides, wait times are horrendous, and if you’re really not ‘that’ unwell, more anxious than anything else, stay home and try to get in touch with your physician through his/her office for a call back.

If quality of care it to improve, there has to be a joint effort between patient and service provider. There will always be those patients who expect miracles, who are far too demanding of ‘the system’, without doing their part. Without ever doing their part.

Several countries, including France, Germany, Australia and the Netherlands provide universal health care but with a twist — they expect patients to contribute to the cost of care. What a concept! Perhaps it’s something for us to seriously consider. When the pocketbook is put on the table, one tends to take stock of what he really can do for himself and for his family with regard to health and wellness. After all one’s health is a significant thread in the fabric of the family.

Surgical wait times compromise health and wellness but there are things that we can do to help ourselves. What I propose doesn’t cost a dime, yet the return on investment may be the difference between staying down and never getting up again or standing up and moving. If we really take a good hard look at ourselves, aside from those conditions or diseases over which we have no control and short- or even long-term medical professional intervention is required, we must admit that we can do something to alter outcomes — become accountable!

Take for example, the person with chronic back pain on a wait list for surgery; he could wait for a year, possibly two. He knows he’s at least 40 pounds overweight already — his doctor has told him that he’s tipping into the ‘at risk’ category for a range of weight-related treatable ‘dis’eases that can be mitigated when he loses weight. Note, I did not say ‘if’. As to back surgery, the doctor, doing his part, will insist on pre-surgery weight loss to improve outcome. The physician has outlined pros and cons and discussed with the patient their own role in outcomes.

My doctor father told me to never let a surgeon talk me into back surgery. It took me years to learn how to walk with a modicum of fluidity and my back is in good shape because I’ve spent decades ensuring that I do ‘the work’ to keep it that way. A recent TIA over which I had no control impacted my walking for a time, with noticeable drag and drop of my left foot. There will be no movie. It’s been done already.

I continue to go along; homemade good eats, weekly dinner and a movie with my friend and being entertained by canines. COVID is out there while I’m relaxin’ in here!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell