After 30 minutes of questions
To summarize over 40 years of blood sweat and fears
The psychiatrist looked up from her notepad
I held my breath for the verdict

Slowly, sitting back in her chair
She delivered it with certainty
Revealing to me
That I have achieved too much in life to have ADHD

I released my breath
It was hot with frustration
Pure exacerbation
Tears streaming down my checks
Releasing years of desperation
Desperate to be believed

I WAS OVER IT

I should have been over it a long time ago
But I was trained to be a good girl
To not question the status quo
Don’t ruffle the feathers of the collective ego
I needed them to keep this avatar alive 

NOW, I’m a woman on a journey 
Of unlearning self-doubt and projected fear
And I have noticed that I give less fucks with each passing year
So in this particular moment I am unapologetically pissed
As I sit in front of this doctor thinking of the growing list
Of moments I was not believed
Unnecessary hurdles between me and all I have achieved

Lost keys, appointments missed, daily anxiety that it would all come 
crashing down because I knew I was forgetting something, I just couldn’t 
remember what it was but I knew it would find me, I just didn’t know 
WHERE or WHEN or WHAT excuse I would need to create to make sure 
that nobody knew that I had ten TVs on in my brain and every show
was the best show I have ever SEEN, and I couldn’t decide which one to
watch so I try to watch them all missing the entire plot of every episode.

I knew without a doubt I had ADHD
Just like my mother knew when I was a child that I had epilepsy
Even though mom was told I was a fake
And that she was just an overprotective mother who shouldn’t question authority
To check her place in the ranks of superiority

Thank God she learned to unlearn or I would probably be dead
Instead of standing here feeling grateful for the privilege to be angry
AND OVER IT

I want to make something clear
I have had incredible doctors help me to succeed
Doctors who listened and believed
That I knew my body, myself, my pain
It’s their example that instills hope when faced with more of the same
IGNORANCE

We’re delighted to present this poem and photograph by Cara Jones, one of the five poems that were selected after we issued a call for poems earlier in the year.

“Exploring text on the body and the experience of being “read” or “judged” by people became a personal fascination at a young age,” she writes. “Growing up with various medical conditions, I struggled with how society perceived my (dis) abilities and began documenting my experiences through poetry.” 

“Experimenting with the art of poetry and photography, I explore the relationship between language, perception and environment. By placing the subjects in diverse environments, I combine elements that reflect my experiences captured in the poems. 

“The Multi-Media Series, People Paper, incorporates handwritten text within the image as a way of infusing the artist into the portrait. This reflects her connection with the writing, the experience and the people (paper) in the portraits.

The photo, “Olympia Is Over It” pay tribute to Édouard Manet’s, Olympia, a painting that stirred a century long debate in the arts around “Nakedness” & “Nudity.” Women are constantly faced with a misogynistic duality of the “Madonna/Whore” construct.

Olympia is Over it, showcasing Albertan artist, Tina Martel, seven weeks after her double mastectomy, is a commentary on the strength, diversity and fluidity of the female experience. The empowered gaze and the ownership of her own life leaves her mentee (Cara Jones) enamoured with her essence, showering her with love and gratitude for her fearless authenticity. 

 The Poem, “Olympia Is Over It”, captures the frustration many women experience when it comes to gender bias in medicine and the struggle of being “believed.”

Bio:

Cara Jones is a writer, poet, photographer and award-winning documentary filmmaker. Passionate about the power of storytelling, Cara has reached out to extraordinary people who have inspired her life journey sharing their experiences through her podcast, Cara Jones Speaks, Shedding light on the Extraordinary. She is a graduate of NSCAD University, BFA, and currently resides in Antigonish, Nova Scotia. To learn more about Cara Jones, please visit her website www.carajonesspeaks.tv 

Note: My WordPress skills are modest, and I wasn’t able to entirely reflect the typography and layout of the original poem. Here is a PDF that is closer to the original.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

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The post Olympia is over it, a poem and a photograph by Cara Jones appeared first on Nova Scotia Advocate.

“You don’t look autistic.”

There it is. Again. I realize I should have started taking a tally starting in June of 2018, when I was diagnosed with Autism Spectrum Disorder in a little private office in Antigonish.

If I had a dollar for every time someone said this, or any other micro aggression in the form of a supposedly well meaning compliment, to me upon disclosure of my diagnosis and advocacy work, I could afford to buy the so-called “Autism Privilege” people seem to believe exists. The general public enjoys telling me how they would love free housing and university, that they’ll take any excuse to get out of that one baby shower their friend is having, or that I’m lucky to have an excuse to tell people what I really think of them.

To try to understand the concept of supposed Autism Privilege, we must first delve into what autism is. Autism is a neuro-developmental difference that affects the way we communicate and socially interact; how we process sensory input such as hearing and touch; and other aspects such as the need for routine, and the ability to hyper focus” on our niche interests, often becoming experts in such fields. Autism occurs in roughly 1 in 59 people, based on the 2018 date found by the Center for Disease Control and Prevention. Obligatory disclaimer: Autism isn’t a disease, nor can it be prevented. It is simply a genetic difference, like natural red hair.

Since those basics are out of the way, let’s explore: where does Autism Privilege come in for me? I’m white, which is of course a large privilege. I’m 25 years old right now, I’m still classified as a youth. That’s a start, right? Oh, and I’m a nonbinary femme, one of the many people who are both transgender and autistic, living in Port Hawkesbury, Cape Breton Island. Wait, these are factors outside of being autistic, and some were actually a hindrance to seeking a diagnosis. Time to back up.

Many people are familiar with the concept of Savant Syndrome, in which people with developmental disabilities have abilities that are allegedly supposed to be out of our range. Along with being autistic, I have something called Hyperlexia, which is the advanced ability of written communication and reading skills, and a strong fascination toward vocabulary and visual information. Yes, as a spoken word poet and general self-proclaimed nerd, this has proven extremely helpful for me. However, it also means I have difficulty processing verbal and auditory information, and I tend to fixate on superficial details rather than the big picture.

I grew up undiagnosed, which translates to being diagnosed as a bullying target because without a doctor’s note or a word to express my experience, I was simply weird. We all know children can pick out the odd duck, but it’s even harder on a child who has strong intrapersonal knowledge or self awareness when adults fail to acknowledge or outright brush off the concerns of a gifted kid. It’s easier to say a girl is antisocial or to tell her she’s not trying hard enough in gym class than it is to seek a solution such as a diagnosis. The reality is I was one of the approximately 40% of autistic children who had a co-occurring anxiety disorder, particularly heightened anxiety. That’s never left me, nor many other autistic adults; the 2 in 5 statistic still rings true after age 18. Autism privilege is children being told they are crybabies when they are hurting.

Like many people assigned female at birth, I didn’t get my diagnosis until I experienced a mental health crisis, multiple in my case. My adolescence was plagued with the approximate five month wait for non-intervention based mental health treatment… Which did nothing. I was told I simply had a hormonal imbalance. In the adult mental health system, my queer identity was medicalized (despite both gender identity and sexuality no longer being classified as symptoms or disorders), and I was told my issue was that I couldn’t figure out how to cope with stress and everyday life. Treatment was cognitive behavioural therapy, prescription was the instruction to hug myself and rhythmically tap on my arms whenever I felt suicidal.

Misdiagnosis and under-diagnosis is rife for women on the spectrum. I did not receive my proper diagnosis until my mum pushed me to see a specialist for developmental disorders, seeing “female ADHD” traits in me upon watching David Suzuki’s The Nature of Things. Autism privilege is the modern equivalent of telling Victorian women their suffering is just hysteria..

While a proper diagnosis and realization that one is not broken is of course a life changer, it does not inherently change one’s life. At 25 years old, I am in the majority of autistic people who have not yet gone into post secondary education, as only 1 in 3 of us do. Although I am working toward the goal of taking accounting, I only have a 20-39% likelihood of actually graduating university a first time, let alone the follow up required for my degree. The Canadian government only provides $2000 a year directly toward student loans for disabled students, with up to $8000 for accessibility supports that we would otherwise need to pay out of pocket as our expenses are naturally higher than abled individuals. Societal barriers facing autistic individuals striving towards academia only further  our somber reality that we as disabled Nova Scotians have an average yearly income of $8565, compared to the national disabled average of $10 335. If I could not make it on my own, I would likely be out of luck, as Autism Ontario discovered that an IQ of 70 is the average cap for being eligible for any form of support as an autistic adult.  Poverty and early death go hand in hand, and I am only expected to live to age 58. 

Autism privilege is a lifespan of 36-58, compared to the average of 70 years old. To think I spent nearly 24 years without access to my full potential, and spending my current time trying to convince others that we deserve a decent life and autonomy. Maybe someone will listen if someone makes a bursary in my eventual memory. I pray it doesn’t have to come to that.

We don’t suffer from autism.

We suffer from stigma.

Taylor Linloff is a nonbinary femme in their mid-20s. After being diagnosed with Autism Spectrum Disorder in 2018, they became an advocate to bring representation for rural and queer-identifying autistics. They hope to soon attend Dalhousie University to become an accountant, and document their experiences in academia in a short film documentary.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

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The post Taylor Linloff: Autism privilege, or the realities of autistic adulthood in Nova Scotia appeared first on Nova Scotia Advocate.

For Immediate Release March 15, 2019

KJIPUKTUK (HALIFAX) – The Nova Scotia chapter of Autistics United Canada announces their inaugural neurodiversity flag raising event on Friday, March 29 in recognition of World Autism Acceptance Day.

Neurodiversity is the natural diversity of human brains and minds. The neurodiversity flag features the iconic rainbow infinity mobius strip symbol on a white background. The rainbow infinity symbol symbolizes the great diversity in the Autistic community, and is widely used to represent the larger neurodiversity community beyond autism, such as ADHD and dyslexia. One of the earliest uses of the rainbow infinity symbol is for Autistic Pride Day, created in 2005 by the group Aspies for Freedom, and the symbol has been widely adopted in the years since by many autistic people and autistic-run organizations.

It is also considered a response to the puzzle piece symbol, which many autistic people consider highly offensive. Long thought of as the main symbol of autism, it has often been associated with the idea that autistic people are missing pieces or puzzles to be solved, so that they can become whole people. In this context, the puzzle piece symbol, as well as the puzzle piece ribbon, are considered by autistic people to contribute to stigma through negative associations.

The Halifax flag raising will be held at Grand Parade, and begins at 10:00 am. Following the flag raising and reading of the proclamation, attendees are invited to a reception in the Halifax Hall at City Hall. Cake and light refreshments will be served. There will also be a chance to learn how Autistics United Canada is working to promote the inclusion of Autistic people in the conversations and decisions that affect their lives, and how they build connections in the Autistic community and work to foster a strong sense of Autistic identity and pride.

Autistics United (AU) Canada is a grassroots self-advocacy organization dedicated to improving the lives of Autistic people in what is colonially known as Canada. All our leadership positions are held by Autistic people, reflecting our core value: “Nothing About Us, Without Us!” AU Canada is also about building connections in the Autistic community and fostering a strong sense of Autistic identity and pride. From local initiatives to national issues, Autistics United Canada has been at the forefront of Autistic-led advocacy in Canada.

Local Contact: Alex Kronstein, Autistics United Nova Scotia Email: NovaScotiaAutistics@gmail.com

The post News release: Neurodiversity flag raising for World Autism Acceptance Day appeared first on Nova Scotia Advocate.

Like so many others who depend on income assistance this person does not want to be publicly identified.

She receives the standard $535 shelter allowance and the standard $275 personal allowance. Also she receives $78 for a bus pass. Her rent is $600 a month and her power bill is $50 a month. She pays $30 a month for minutes on her cell phone. So after she pays all of that she has $130 a month left to live on.

She has asked for a special diet allowance, but that got denied, even though she had the letters from her doctor. That happens a lot, and it is often most unfair, as I explain in this older story I wrote for the Halifax Media Co-op.

She has mild issues with depression and has been diagnosed with dyslexia and ADHD as a kid. She grew up in a small town in Ontario and she moved to Halifax when she turned 19.  Some very painful things happened to her when she was young that made her want to move this far.

She tried to get accepted into the Career Seek program, a program that offers support for people on income assistance who want to take post secondary education.The program would not accept her.  When the career seek program made the decision to not accept her, Community Services would not allow her to through the appeals process so she could not appeal that decision.

Anyway, here in Halifax she has applied for a zillion jobs and she could not get hired anywhere.

In order to keep herself out of social isolation, a challenge for many if not most who live in poverty, she resorted to going to the drop-ins and soup kitchens. However she is also a person who is very specific of who she gets in with, and she found form her personal experiences of attending those places that she was not making good friendships.

So what she did was she started checking out different churches and she found one she really likes. So she started attending regularly. The main reason she goes is because she needs that couple of hours to be out and socializing with like-minded people. Until she started attending that church having like minded people in her life in something she felt she lacked.

She had been going to that church for coming on three years and within the past year she started volunteering there. Her volunteer work is what is keeping her $78 allowance for her bus pass safe.

She shared with me that she would like to have friends who are closer to her age. We agree that getting out in the community and going to school or having a job is the appropriate way to keep out of social isolation. Also, it is much better way then depending on soup kitchens and drop-ins. She considers volunteering at the church as her temporary solution to achieve keeping out of social isolation.  She worries about how in her future she is going to go about meeting people.

When she first came to Halifax, during her first year in this city she lived in a rooming house with seven men. She was not comfortable with being the only woman living in that house and she moved out as soon as she found her own place.

She ended up moving to Dartmouth North in order to find affordable rent. She describes her building as one building that from the outside “you can tell is not maintained. Many other buildings surrounding her look the same way.  She really wants to move. Whenever she can, she stays away from her apartment from the first bus that leaves in the morning right through until the last bus back at night. I used to do that myself when i lived in Dartmouth North.

She wants to go back to school and study social work. When you are on income assistance, the only way you can go back and get a student loan is if you get accepted into the Career Seek program. People who gotten to know her through her church have offered to write letters for her.  But with all the red tape that is involved with Community Services I would not be surprised if even after those reference letters they end up not helping her out at all.

Kendall Worth is a tireless anti-poverty activist who lives with disabilities and tries to make ends meet on income assistance.

If you can, please support the Nova Scotia Advocate so that it can continue to cover issues such as poverty, racism, exclusion, workers’ rights and the environment in Nova Scotia. A paywall is not an option, since it would exclude many readers who don’t have any disposable income at all. We rely entirely on one-time donations and a tiny but mighty group of dedicated monthly sustainers.

The post Kendall Worth: Full of hope appeared first on Nova Scotia Advocate.

She was on social assistance before, at which time she got bullied by friends and family members, lost friendships, and felt stigmatized by her caseworker.

She mentioned to me that she has been diagnosed with a learning disability and ADHD. Also her intellectual functioning is mildly affected. In addition, she also described herself as living with a mild case of social anxiety.

In fact, it’s a story I wrote about my own way of dealing with social anxieties that made her contact me.

Right now she is on Employment Insurance (EI), after losing her last job. But that will be running out soon.

She feels that the company’s decision to let her go was not her fault. A letter she showed me states that her supervisor believes she cannot work well with her co-workers because of the intellectual challenges she lives with.

She blames her so called “involuntary body behaviours” such as fidgeting and talking to yourself for much of her current misfortune.

Again, these are also issues I live with myself, and I have written about it in this story.  

She hopes somebody who reads this story will understand and maybe offer her a job.

All we can do is hope for a better future for her and others in similar situations.

The post Kendall Worth: A very sad story appeared first on Nova Scotia Advocate.

Oh, and they all feel nobody at Community Services wants to listen to their concerns, so make that four things in common.

When I got together with these income assistance clients for coffee, they told me their stories. They suggested I write an article in the Nova Scotia Advocate about their situations. 

They have asked not to be identified in the article, so I am going to introduce them as person A, person B, and person C. Just like most who are on income assistance, they are scared to come forward.

All three happen live in the Clayton Park/ Lacewood Drive area of Halifax, and all three of them pay more rent than the $535 to $620 monthly shelter allowance Community Services allows.   

Person A

Person A  is a single mom. Her rent is $750 a month for her two bedroom apartment plus lights. She uses her living room as her own bedroom so the kids can each have their own rooms.  She lives with OCD, also known as impulse control disorder. This is one area where I can relate to her case, as I have that disability myself.

A person with that disability can only handle part-time work, because of the stress that is involved with holding down a full time job. She did work a full time job in the past but had to quit because she found could not handle stress well while at work. Form my own experiences with OCD I was not surprised. Anyway, she told me gets a total of $895.00 a month on her income assistance cheque.

The father of her kids does pay her child support, which gets deducted from her income assistance allowance at 100%. This reminds me of a story Tim Blades wrote: Time to end child support clawback for parents on welfare.

Person B

She told me that as a kid she had been diagnosed with a learning disability and ADHD.  She also told me that she has issues with lifting over a certain amount of weight and that is a barrier to employment. She is currently getting medically tested to find out if she might have Crohn’s disease.  

She gets a standard $535.00 shelter allowance for her rent and $275.00 for her personal allowance. Those are the same allowances that anyone in Nova Scotia on Income assistance is entitled to. Her rent for her one bedroom apartment is $600.00 a month plus lights.

Currently $25 is deducted from her income assistance cheque to pay off an overpayment. She did say that it will be paid off in a few more months. However until that overpayment is paid off she is only getting $785 per month.

She cannot get a transportation allowance through her caseworker. A volunteer organization in her community gives her a donation of bus tickets so she can attend medical appointments with her specialist.  

Person C

Person C mentioned to me that she has anxiety and is mildly autistic.  She pays $695 for her one bedroom apartment plus lights. She cannot handle immediate relationships. She spends anywhere from 50% to 90% of her time alone, which is how she prefers things.

She does do volunteer work two days a week. However her caseworker will not give her bus tickets to travel to and from her volunteer work. She has to take $20.00 out of her personal allowance to cover her bus tickets to get to her volunteer work.

Worried about rising rents

Something all three of them told me is that they want to stay in the Clayton park/Lacewood Drive area of Halifax.  They mentioned to me that they have heard from their neighbours and people in the community that landlords are trying to get the people on welfare out of that neighbourhood.

Also, they know that rents are going are going sky high In that neighbourhood and they are scared that eventually they’ll have to move  to a different and possibly less safe neighbourhood. Person A brought up about how Clayton Park is such a nice area of Halifax to raise kids. Keep in mind, person A is a single mom.

Very unpleasant caseworker

By coincidence all three have the same caseworker. All three describe their case worker as a stern type who behaves like she is laying down the law when their annual review takes place. This caseworker tries to silence them at their annual reviews, they say.  

What’s more, they feel that the caseworker is way too suspicious, and reinforces the stigma that many people on income assistance live with. Every single time they talk to her, whether it is at their annual review or over the phone, she asks them if they receive any support and care outside the Employment Support and Income Assistance (ESIA) system.

They are annoyed with their caseworkers having that attitude toward them. Also, all three of them told me that they get outright annoyed with having to prove their disability every year at their annual reviews when their medical condition/disability is chronic and will not change.

All this did not surprise me because in my community plus from my own experience I have heard similar stories and I can relate. They also shared with me that when they tried to complain to higher ups in the department of Community Services about the attitude of their caseworker, no one would listen to them.  They just get directed back to their caseworker by higher up staff.

Will the transformation solve these problems?

The current ESIA transformation taking place here in Nova Scotia is supposes to make life better for people income assistance. One question I raise in this article, Why I support a guaranteed basic income,  is “is the transformation going to stop these kinds of things from happening to clients?”

All this goes to show that  the government in Nova Scotia does not care about the real issues.  All three told me that if the system does not change soon then they do not know how they are going to handle attending annual reviews in the future.

This article here, All that’s wrong with the much feared annual review and how to begin to fix it,  speaks volumes on why the annual review process needs to change.

All we can do is hope that life will get better for everyone. One thing that is especially concerning is that told me that they cannot access professional advocates to attend their annual reviews with them. This is sad, because if they possibly could access professional advocates to attend with them then maybe the caseworker would treat them with more respect at their annual reviews.   

Something has got to happen soon.     

If you can, please support the Nova Scotia Advocate so that it can continue to cover issues such as poverty, racism, exclusion, workers’ rights and the environment in Nova Scotia. A pay wall is not an option for us, since it would exclude many readers who don’t have any disposable income at all. We rely entirely on the kindness of occasional one-time donors and a small group of dedicated monthly sustainers.

The post Lives on welfare: Three stories about annual reviews and a disrespectful caseworker appeared first on Nova Scotia Advocate.

Saturday past I attended the funeral of a beautiful 13 year old girl who was murdered by words. It was the most heartbreaking service I have ever attended. She was the third child in our school district to die by suicide due to bullying in the last few months. It really makes you sit back and think, what the hell are we doing wrong? What is happening on our little island? How can we save these children?

After a lot of tears and talking to my kids and deep thought and prayer, this is what I came up with. Our island is falling apart. We are losing the services our children need most.

Bullying has always been part of growing up. It sucks and it is hard and it hurts. I remember in grade 7 and 8 going to see the guidance counselor often, he was a great man and would chat with me and help me through it. Our children today don’t always have that. Many schools ( including my boys schools ) have shared guidance. Meaning the guidance counselor may be at your school or at one of the other schools they have to cover. If you are in a crisis, well, you wait.

School psychologists are covering even more territory. Psych Ed evaluations can take years, leaving kids falling behind waiting for assessments that could explain why they are having difficulties. If a fish is being tested on how well they climb a tree, they will live their lives thinking they are stupid. The same goes for children. These kids can not go years waiting to find out what their learning disabilities are.

Of course, if you are able to afford it, you can pay the $1,200 or so out of pocket rather then wait, but the poverty level is so high in Cape Breton, not many can afford it. So, the kids fall behind, they are either being bullied for being different or lashing out from not being understood. We can’t keep losing these services that our children so desperately need in the school system. The teachers are  wonderful, but the system is broken. They can only work with what they have. Our small schools are closing, the ones that are staying open are filled to bursting.

If you are really worried about your child, you can take them to the doctor for a chat, see if there is something deeper happening. That is, if you are one of the lucky ones to have a family doctor. My children and I have been on the waiting list for a few years. We were lucky to have a clinic we could go to but it recently closed. Our list of diagnosis is, in no particular order, autism, ADHD, Tourettes, SPD, OCD, Gingival Hyperphasia, various issues related to micro prematurity, and B12 deficiency requiring bi-weekly injections.

We have no primary care. The nearest walk in clinic is 40 minutes away, and they only take a certain amount of patients a day. They also can’t prescribe the narcotics that one of my sons needs to function on a daily basis. Our emergency room is only open from 8-3 and is often closed on weekends, emergency rooms also don’t prescribe his narcotics. The next closest hospital is so overcrowded that it is the norm to wait 8+ hours to be seen, not at the fault of the wonderful nurses and docs who do their best with what they have, but with the system itself that is broken.

We also have mental health services you can turn to, if you don’t mind waiting. I recently waited 8 months for an intake appointment for my son. From what I am hearing we are some of the lucky ones, the average wait times are over a year. If you are in crisis you simply can’t wait for a year to see a mental health specialist.

With all of these hurdles facing us on this island, it’s not hard to lose hope. How are we as parents supposed to help our kids if we can’t even get them mental health help in a timely fashion? We can monitor their social media, watch their phones, have all their passwords….. but it still takes a village. We need and deserve access to the specialists that can help our kids.

This post was originally published on the One not so bored housewife blog

If you can, please support the Nova Scotia Advocate so that it can continue to cover issues such as poverty, racism, exclusion, workers’ rights and the environment in Nova Scotia. A pay wall is not an option since it would exclude many readers who don’t have any disposable income at all. We rely entirely on one-time donations and a tiny but mighty group of kindhearted monthly sustainers.

The post An island in turmoil: Living the Cape Breton mental health crisis appeared first on Nova Scotia Advocate.