Worth Your Money : Mental Health Funding in Toronto Prioritizes Research, Ignoring the Needs of Patients

My mom, a group facilitator at Toronto’s Center For Addiction and Mental Health informs me of new changes being made to the hospital that will prioritize research over specialized patient care. I listen to her, watching my depressed thoughts pool into a pile of “The World is Junk Forever” and waiting for her to tell me something that doesn’t sound helpless.

“So, in September I am out of a job.”

My mom and I walk my dog through Parkdale, Toronto’s Wild West, my place of residence and her place of employment.

For nearly ten years she has worked as a peer supporter at Toronto’s Center for Addiction and Mental Health (CAMH), a facility infamous for its contemporary improvements of their past reputably cruel treatment of mental health patients.

Aromatherapy and beer keep me working.

I spent the morning at my bi-weekly visit with my psychiatrist.

I informed her of recent developments in my life: My father cut off my income, the job market is massive, I am not qualified for anything, I feel like a fucking loser, and then of course the part I didn’t tell her: I am fighting suicidal ideation and I can’t stop scribbling plans for a dark whatever.

I know better. I am not in danger. I have just arrived in Hell and it feels hot for now. I’ll be fine.

Depression was already here.

In light of my past summer’s diagnosis of Retinitis Pigmentosa, a degenerative condition that is likely to eventually render me completely blind but for now I just remain “basically blind”, my dad sent me to New Jersey to receive specialized acupuncture.

I protested for months. Dad sent countless emails with links, testimonies, YouTube lectures from the doctor he was dying to introduce me to, “Rachel, why don’t you do listen to me?”

I’m Sorry? Aren’t You Supposed To Listen to Me About My Own Health?

Apparently not. Why?

Likely because I have more than one disability and I am therefore, in his eyes, not credible.

I have had trouble with my eyes my entire life. My father has been gaslighting me for years, insisting that actually the problem was just symptomatic of anxiety, stress or maybe even bi polar disorder which is mental health label that physicians have used against me ever since I was diagnosed ten years ago.

My optometrist and my father would not believe me as I slowly went blind and saw the world more and more either as a bright nothingness or a dark absolution but certainly not a safe reality.

I found a new optometrist. I got diagnosed properly. And again. And again. Second opinion. Third opinion. And then my father went looking for a cure on a fail-safe Internet medical advice safari.

Fast forward to November, I spend two weeks in nowhere, New Jersey getting stabbed with needles while nothing changes other than a huge dip in my mood.

I left with worse vision and a broken will.

I began to distrust my father.

Something I do when I am feeling suicidal: I literally write a book about it. Take a notepad or small notebook and a pen and scribble whatever you feel. If nothing else, it won’t kill you.

His Privilege Restricts His Empathy. I Am Sick of Feeling Extra Disabled Just Because He Can’t Say “That Really Sucks”

Mental Health treatment was at one point the propagator of public stigma. Instead of trusting testimonial of patients, doctors classically relied on research and therefore missed the mark on how to treat.

It wasn’t long ago that my mother was a patient at CAMH.

In the 1980s, she experienced the raw raw junkyard that was “psychiatric care”. Her personal stories from her stay there include that one time she almost set herself on fire when she fell asleep while smoking a cigarette all the while mentally whiped out from the intense dose of anti-psychotics she was given for the sake of a hush, a letting go, of an illness they did not quite know how to name yet.

My mom was mistreated. She has not given me permission to share her story but I am so proud of her that it has hard for me to keep in the reality: Misdiagnoses and flat-out lies delayed my moms recovery.

Eventually mom met a younger doctor and he helped her fight the uphill battle that saved her life.

Ever since, my mom has volunteered to help struggling mental health patients.

My Mom is a Shining Example of Why Mental Health Patients Should Never Be Underestimated

My mom has led peer support groups at CAMH and at the Mood Disorders Association of Ontario (MDAO, a great resource for residents of Ontario who need help with their sanity).

From her stories of “Group” I have come to decide that she has gone above and beyond the call of duty, especially since she works as a volunteer.

She has relayed stories of true chaos: Some guy throws a chair at her, some woman takes over the room with monologues involving threats to the general public, some other guy stabs himself in the thigh.

Now my mom is losing her job.

“Once they move into the new building, there won’t be any group rooms. Just rooms for general patients. They aren’t even going to have an anxiety and moods ward. It’s just general.”

We head home past the hospital and mom shares some of the changes that will be occurring in the hospital, as told to her by a recreational therapist.

CAMH is a famed presence on Queen St. West, its grounds extend entire blocks, stabilizing a campus that is known for its eclectic population who, if they have grounds privileges, are able to float around the neighbourhood, enchanting pedestrians with whatever outrageous or maybe even subtle expression of their mood they care to share.

CAMH and its neighbouring parks, shops and restaurants can be a little scary for some civilians who aren’t used to the area but in the past decade the hospital has designed art shows, farmer’s markets and similar outreach programs to help de-stigmatize their patients.

Of course, it will take a whole lot more than a farmer’s market to eradicate the city of mental health stigma.

CAMH can organize carnivals, car washes, they could build an entire Disney World of Mentally Ill Characters, Rides, Attractions, beckoning “please forget everything we ever taught you about mental health, please remember that if your friends and family members receive health and care for their disability they will likely still live as eligible members of society” but for some reason this institutions legacy of stigma still drips from their foliage.

For at least two years CAMH has been building a new space.

Just to the West of their current building, they have raised a reported total of $633 Million in government funds to build a new facility.

The natural assumption is that they are building a space for better care.

“No. They are just building rooms and then they are putting all this money into research. There won’t be a room for groups.”

“What do you mean? Group therapy and peer support is fundamental for patient recovery. Isn’t that obvious?”

“I guess not to the board.”

I am outraged. I can’t feel my feet.

“Who is on the board?”

Mom shrugs. “People with money.”

It seems to obvious: There should be mental health advocates sitting on the hospital’s board of directors and they might be there but how loud are they really if finance is prioritizing research over the care of patients?

My head feels hot. The wooden spoon of empathy beats at my stomach as I consider the injustice of privileged disbelief.

The hospital is generalizing the units so patients with varying diagnoses will be sharing units, limiting the amount of specialized care and essentially moving the hospital back in time to a day where they were truly ignorant of the varying diagnoses.

No one is ignorant now. Now we’re just unwilling.

It’s too Easy for Privilege To Discredit Disability

Due to my mother’s illness, I spent most of my childhood in the care of my grandparents and my father.

From a young age I suffered detrimental chronic depression.

“I hate everything always and I don’t know why,” I told my grandfather when I was eight but he just called me “baby” and in fact, the nickname “baby” followed me around my upbringing without rest.

I still struggle with self advocacy but maybe thats because it’s sometimes virtually impossible.

As my dad cut off my income, I told him, “So I need to find a job.”

With some of his background in reality, he came up with the shortsighted suggestion of my becoming a building manager.

“But you need to drive for that. I’m blind,” I remind him because he never remembers.

When people discredit your experience with a disability, all that’s left is to feel like a fucking loser who should die.

“Well you can take cabs.”

“Cabs? They won’t hire me if I am blind.”

“Well then you should work with dogs.”

“AGAIN DAD, YOU NEED TO BE ABLE TO DRIVE.”

He shrugged and stared out the window with his back to me, stretching.

Thanks a lot dad for your support while I descend into the helpless depths of self-reliant unemployment but

How Do I Gain Self-Worth When I Keep Stumbling into the Shortsightedness of My Supposed Support Group?

Self advocacy is impossible when stigma flies in the way of our testimonies’ credibility.

At times it seems, my worst disability is the assholes who won’t believe that I am capable if you’ll only believe the truth of my experience: I do everything I can to act normal around you and the most you can do to congratulate me is tell me I’m not working hard enough.

We need more peer-advocates in charge. We need strong, credible individuals to tell the world we’re worthy. We need places like CAMH to remember that they work for our care. We need my mom everywhere, working for all of us all the time. If only Bi Polar Disorder wasn’t such a vulgar label.

Fuck.

Give my mother more power.

Mom’s discussion of “all this money” refers to the over $130 million of private funds awarded to the hospital this year which, according to her (unnamed) colleague, is being funnelled in its majority to research and education.

After reviewing the 2020 strategic plan for CAMH, I want to point out that their new “tomorrow.today” plan invests most of its initiative in teaching families and patients how to find help elsewhere and, true my mom’s rant, they are investing most of their money in research.

Part of CAMH’s Strategic Plan for 2020. Their aspirations focus on reputation, education, change. Who is focusing on the patients?

They are researching disability for the apparent sake of…who?

With a seeming lack of respect for their patients, taking away peer support and recreational therapy in favour of something called “research”, who can even benefit from genius that will come?

Believe me.

I want you to believe me.

Stop researching. I’m right here telling you: It takes support and recognition to heal. Fuck your research. Just listen to me.

If you are struggling with your mental health or you are considering suicide, please understand that YOU are an emergency. Google your local hotline right now!

If you are in Ontario, call the MDAO hotline: 1-866-363-MOOD (6663) or visit their website for more support options.