Exhausting

My husband and I are both active people. Victor writes, and is currently creating an exhibition for Winnipeg in September, funded by a Canada Council of the Arts grant. I’m a PhD candidate at UBC-O.

However, that’s not the full picture. The world sees us differently, because we are both disabled. Victor has multiple disabilities, from severe osteoarthritis in pretty much every joint, which led to the amputation of his lower left leg to 50% deafness to chronic depression. We joke that, in comparison, I have just multiple sclerosis. We both have pain issues – Victor’s are greater than mine – and fatigue – mine greater than Victor’s, and a whole host of other symptoms too numerous to mention.

Revisiting our life as active people – Victor’s exhibition is called “Look”, and has a subtitle of “Pieces of my mind/My body in parts”, and writes extensively about his life as a disabled man. I’m a disability advocate, Co-Chair of Disability Without Poverty, and my PhD research looks at why we see it as acceptable for younger disabled people in to be in long-term care facilities.

The medical system sees us differently. It sees us in pieces, disconnected. The specialists see our bodies in parts, but not as a whole. We are two people who have to dance to their tune, whose time isn’t important, and who do not have control over actions that happen to them, rather than with them. Sadly, everything that happens over these two days is not new, and not particularly shocking to most disabled people. It’s not even the worst things the system has done to us – it’s just what it did this week.

Our week so far:
Monday
Victor gets a phone call to cancel a major appointment to assess our care needs for the coming year. We had cleared our calendar for this, making sure we were both available for at least two hours. The appointment is not rebooked. This is a crucial appointment for us. We have talked about it, prepared for it. It’s stressful to be assessed by a stranger on your deficits rather than your successes in the way you live with disability.

We also find out that Victor’s wheelchair, chosen in December, has finally arrived at the wheelchair store. However, it cannot be delivered without the presence of an Occupational Therapist. Through the conversation with the person in the wheelchair store, we find out that our assigned OT has changed – no message to us that a member of our medical team has changed. The new OT is not available, so we still do not have the wheelchair. It sits in a storeroom. Victor waits.

I get a phone call to book my next MS treatment, an infusion that leaves me in bed for a week, and catching up for a second week. I write off two weeks, preparing those around me that I will not be available.

Tuesday
Victor continues the supposedly simple task of renewing his prescriptions. It’s complicated by the fact that his doctor left in April and there’s no-one to replace her, not just in the practice he goes to, but in the whole of the city. However, there is a walk-in clinic that belongs to the practice where his records are held, and where he’s on the waiting list for a new doctor, one that was meant to arrive in March but still is held up by paperwork. The phone conversation goes well, the prescriptions are being renewed, until it comes to his main pain relief – a narcotic. Narcotics are not prescribed through walk-in clinics, we are told.

Victor hands me the phone to continue talking to the doctor while he cries. It is indescribable to watch the fear on his face as he faces 20 days until he runs out of the medication that allows him to function in the manner he does, one that is still full of pain, albeit tamped down by the medication. The doctor tells me he’s not a bad guy, that he listens to lots of patients just like us, daily, who are being failed by the system. I advocate for Victor as strongly as I can, explaining to the doctor that I understand the challenges he faces, that the system has put him in a no win situation, but really, the person that I care about that is losing, is Victor. I urge the doctor to look at his records – he will see that he is not someone who abuses his narcotics, that in fact, the previous doctor had wanted him to take higher amounts than he takes. The doctor replies that he doesn’t think we are looking for these drugs to abuse them, just that the legal processes he has to go through to prescribe them mean that this process is not appropriate for prescribing through a walk-in clinic, where there’s no follow up. He relents and renews the prescription for a month. I will write to my local MLAs and MPs, my part to help the doctor in his daily struggle to give the best care to the people he sees.

We have 50 days. 50 days to solve a process that it is thought over a million people in BC are struggling with – having a full time family doctor. For some people, healthy people, walk-in clinics are sufficient. They deal with the coughs and colds, the bladder infections, all of those short term illnesses that need something stronger than Tylenol. But, if you need deeper interventions, stronger drugs, follow up, there’s no doctor for you.

We bring up our next issue. On Wednesday, Victor has an MRI of his cervical and lumbar spine. Who will read the radiologist’s report? Who will recommend treatment options, put in referrals, see that his narcotic prescription is needed? The answer stuns us. One of the receptionists reads the radiologist reports for patients on their waiting list – those like Victor who had a doctor but they left – and decides whether they should be forwarded to one of the other family doctors to act on. We are shocked – the decision is not made by medical personnel. What if this person with no medical training misreads something, doesn’t understand the severity? Then what?

Monday and Tuesday – just two days – have been physically and emotionally exhausting. Navigating the system is a full time job. We are angry, frustrated, and feel that we are seen as lesser citizens, where appointments are not kept, personnel change without our knowledge, equipment sits and waits, drugs are withheld, reports left unread. The cumulative effective of dealing with our multiple contacts with a system that sees us in our separate pieces, never as a person, as a sum of those parts. As a burden, with low expectations for us and how we live our lives.

Victor and I approach life with privilege. We are white. We have a roof over our head and a consistent income that puts food in our cupboards. We are educated, and we know how to advocate for ourselves. And yet, the system breaks us. We cry, and we are scared. And still, we continue to work. We reply to emails, make decisions about Victor’s exhibition, deal with the flurry of attention when a motion passed unanimously in the House to ask the government to table the Canada Disability Benefit Bill.

I think of the at least 1.4 million disabled people in Canada who live in abject poverty, receiving often half of the poverty line in assistance. How do they navigate a system that seems to be designed to fail them, financially and medically? I have statistics running through my brain constantly. 60% of people with MS end up unemployed. Roughly 2 in 10 of Canadians are disabled, but 4 in 10 of the people who live in poverty are disabled. Only two provinces have indexed linked benefits. ODSP, Ontario’s disability assistance payment, is $1169 a month. Poverty line in GTA? Over $2000. The Atlantic provinces don’t even have disability assistance programs – Newfoundland, welfare is $905. And, the cost of being disabled? Roughly 40% more than not being disabled. That $2000 poverty line becomes $2800.

Behind every number is a person. Someone who is navigating the medical system and the social system, and neither sees them as a person.

It’s exhausting. It never stops. For some, it’s all too much, and they use the only government system available to them – MAiD – Medical Assistance in Dying. The reason they die? Poverty.

Tomorrow Victor will go for his MRI, at 7am, and then goes to collect new glasses. Tomorrow I will call places and send emails in the continual search for a family doctor, to find our OT, to get the appointment with our community nurse to assess our care. It’s such hard work. We do it to get by, and in solidarity with every other disabled person in Canada who fights the same battles every day.

-Michelle