Able Humans of Ottawa

04/26/2022

(1/3) “When I was 16, I got mono and got really sick. I was really tired all the time and I had it for three months but I never felt like I was getting better. My throat got better, but I was still tired all the time. I would come home from school, and go to bed at 3pm and then wake up for school the next day and not do my homework.

A year later, I was referred to a neurologist and diagnosed with narcolepsy. So, my brain kills off hypocretin which results in waking behaviors intruding into sleepiness and sleeping behaviors intruding into wakefulness. It can lead to falling asleep in inappropriate places at inappropriate times. I'll start to dream before I fall asleep and after I wake up - and these are visual, auditory, tactile hallucinations. Cataplexy is the worst symptom for me which I developed in university. One day, I was laughing and just collapsed. I could see, hear, and feel everything, but I couldn't move. When your brain is in REM sleep, it paralyzes your body to protect you from acting out your dreams. That happens in cataplexy while you're awake, and it's triggered by strong emotions. People called me the fainting goat girl, and they would purposely try to put me into cataplexy. It was a really bad situation that I was living in, because it was a game for some people around me.

I didn't know I could ask for different medications or that I could talk to my doctor and say things weren't working. I didn't know what the options were. I got into a really dark place and at 22, I had a su***de attempt. In the hospital I saw a sleep specialist. It was amazing because he knew exactly what I was talking about, what my struggles were, and he took me under his wing. I stayed in inpatient psych for a couple of months, then did a six-week outpatient program that focused on stress relief, individual therapy, and CBT. I honestly think everybody should do this program because it helped me to see what was at the root of my issues and gave me a toolbox to work through them. It turned out to be a really good experience in the end.”

04/26/2022

(2/3) “After I got out, I met this model and the more she said, the more I suspected she had narcolepsy. I asked her if she had talked to her doctor to do a sleep study. She came back and she's like, “You're right. I have narcolepsy”.

At that point, I had so much experience in navigating the health system and what to do with medication and she had a set of skills for web design and business. So together, we started a not-for-profit for narcolepsy awareness. We called it NAPS (Narcolepsy Awareness Programs and Services). It’s a place to start, and keeps people up to date with the latest treatments and research. We also run support groups in Ottawa, Calgary, and New Brunswick, and it’s creating communities online for Canadians with narcolepsy.

It’s really rewarding to get involved in these communities and find people who, like me, were struggling and didn't really know where to go. I wanted to be there for my younger self, so this was kind of the way that I could bridge the gap for other people. There's a lot of things we achieved, like a bursary for students with narcolepsy and a proclamation for narcolepsy Awareness Day in Ottawa. We were also able to complete a case study and bring awareness to a medication called Baclofen for narcolepsy patients that is much more affordable than Xyrem. I see now in regular narcolepsy support groups it's becoming this well-known treatment within the community for narcolepsy, which is super exciting.”

(Photo from NAPS page https://www.facebook.com/narcolepsycanada.ca/about/?ref=page_internal)

04/26/2022

(3/3) “A challenge I've noticed is the stigma around, what do I tell my employer? The government is a great employer for people with disabilities but there are more challenges in the private sector and finding employers who are willing to give accommodations. Things have changed now that people are working from home with the pandemic, and I find that accommodations are easier for those types of people. But finding out what we can do about helping people find accommodations or why employers are reluctant to give them is still necessary.

Another challenge is navigating the system in terms of what's covered by insurance, what specialist do I need to go see, how do I approach my doctor and ask for a sleep study, how do I get my doctor to prescribe me an off-label medication? NAPS created a place where people can go for these questions, but it would be great if there was something like that for all people with disabilities in general. That's something I want to look into and want to work on.

I'm very aware that there's such a thing as toxic positivity. Not everyone's disorder is going to respond to medication, it’s not achievable for everyone who has a chronic illness. I've been very lucky that I found medications that work, and I've had employers who are incredibly accommodating because even with medication I still have a lot of sleep inertia. But there is a lot to be said for not giving up, and if you don't have the strength to fight for yourself, find someone who's willing to advocate for you. Even if it's a doctor who was willing to take up the cause or just support you.”

03/17/2022

“I've lived here in Ottawa for like, a year and a half. The problem I've had with accessibility is in the basement of this building. I can't get to my car, for example, if I'm in a wheelchair. I can walk fine on some days, just flawlessly. Like you can't really see it. They used to think I was very lazy when I was young, because you can't tell the person - unless of course, I'm in a wheelchair or using a cane. My mother noticed I cried a lot when I was about three. So I started getting sent to specialists. They found out that juvenile arthritis was the closest diagnosis.

Pain is the most significant symptom - it affects me most. But also lately it's been concentration and sleep that has been changing a lot. I need almost twice as much sleep. And my concentration just isn't there. I can't read a book anymore for example. I just don't focus. I grew up more normally, but with a lot more pain… And I've tried almost anything. Like, I'm on the last resort now. The pain is there and you can't really do anything about it but you can definitely educate yourself. Don't give answers like 'my mom had arthritis therefore you must experience it the same' - everyone is different.”

01/29/2022

(1/2) “I have a rare illness called von Hippel Lindau disease. It's a mutation in the VHL gene that causes us to struggle with different tumors and cancers. It's really difficult to get treatment and diagnosis because it's so poorly understood.

I'm not visibly physically disabled. But I do have a lot of small things that compound to make life more challenging. Walking is tough, but I am perfectly capable of walking. It just hurts. Tumors in my retinas affect my vision. I'm not blind but they can go super blurry. Most of my accessibility issues stem from chronic pain and because I don't look ill I don't have access to a lot of services that people with mobility challenges do - and if I try to access them, I'm often challenged so I just don't bother.

I once went into a Costco and there was a donor service set up and the guy said to me, “Did you know you can set up to be an organ donor?”, and I said, “Actually I can't, I have cancer”. He says, “Well surely you must have some organs that are unaffected”, and I was like, “Actually, I have cancer in all of my organs except my heart but my heart’s been damaged by side effects from the other tumors”. He's like, “That's ridiculous, you're way too young to be that sick!”.

He judged me based on my age and appearance. So he looked at me and thought you are perfectly healthy, you're just lying about this. I was totally heartbroken because I was listed to be an organ donor before this all happened but I couldn't continue to do so.

My high-in-the-sky dream would be to have things be more accessible. And to have consideration made to anyone with invisible illnesses or other issues that cause accessibility problems. Even just knowing that it's not a burden for us to access those services would go a really long way.”

01/29/2022

“My son has the same illness, and he had to have his adrenal glands removed when he was seven. We have very strict instructions with the school that if he gets injured, we need to be called immediately because he needs immediate medication. He is adrenally insufficient, so he could die if he breaks his arm or something, and doesn't get medication immediately.

He's 11 now, and he looks incredibly robust and healthy. He's super physically active, he's really fit. So you would never know that he's got this life-threatening condition, and people just make assumptions all the time. I think that’s my biggest pet peeve; assumptions that anyone knows what we're going through. Nobody in Ottawa has VHL except for us that I know of, so nobody should get to tell us how we're feeling.

He and I are very close. And I think a lot of it is due to the fact that we both have the same illness and nobody knows what we're going through except for each other. He determined that he wanted to do anything he could to help bring awareness, especially for other kids that might be going through what he's going through. He's actually been quite active in a number of different committees that I'm in. Whenever they talk about pediatrics, he wants to get involved and talk to people and talk to other kids. Yeah, he's pretty awesome.” (2/2)

01/17/2022

“My name is Kelly. I’m a mom of two and I work in science communications. I’m a runner, and an avid reader.
My experience started 2 years ago when I was diagnosed with amyloidosis — a rare disease that, in my case, affects my vocal cords. Over the course of 2 years I lost my voice almost completely. After 2 surgeries it’s been restored to about 80% of what it was but I’m still self-conscious that my voice is not the one I used to have. From the time my voice started to deteriorate, to getting diagnosed, and through both surgeries, it was challenging to communicate at home, at work, and in general day-to-day life. Once the pandemic started, my voice still wasn’t normal. I felt even more self-conscious in situations knowing that some people wondered if I was sick (or asked). I’m a private person but would explain my condition to make interactions easier.
My workplace was incredibly accommodating, ensuring I was still able to attend and participate in meetings. My colleagues also showed me a lot of support. My biggest struggle was simply my inability to communicate. It’s a cliché, but you really don’t know what you have until you lose it. My voice was something I had always just taken for granted. When it was particularly bad, I was using a whiteboard and typing out notes to communicate and trying to parent my young children by clapping to get their attention. It really affected my confidence going into social and work situations.

I think it would be wonderful if the use of sign language was more common in our society (it’s something I would like to learn myself!). I’ve also been lucky to be able to prioritize my care, and I believe everyone deserves the same. Access to paid sick leave would help people to better manage these aspects of their lives. If I’ve learned anything from this, it’s that you can never take your health for granted.

I think accessibility and inclusion means ensuring there are as few barriers in place as possible to access services and supports. Everyone really is fighting their own battles and if we could all be a bit more compassionate with one another that would also go a long way. I would encourage anyone who is struggling to reach out to friends and family for support."

01/06/2022

“My name is Nicole. I’ve been disabled for nearly 4 years, after arthritis wrapped around my C3 to C7. I also had a stroke 3 years ago. I had major cervical spinal cord surgery which worsened my body mechanics. I also contracted COVID while in hospital and instead of receiving rehab I ended up on the COVID floor. The surgery damaged many nerve roots, handicapped me on both sides, when I only had issues on the right side. I am now living with excruciating chronic burning nerve pain, numbness, loss of fine motor skills, dexterity, muscle loss, mobility which are getting worse - unknown whether a wheelchair is my future. I am also dealing with depression and anxiety. There are several things out there that could help, but physiotherapy and nerve therapy are not covered for seniors without insurance.

I’m taking zoom workshops for pain management but lack of doctors being present is an issue. Both my neurosurgeon and my neurologist retired within 3 months of each other without a replacement.

One day in October, I took a friend who has ALS to a public place called Humanix. We got out, paid our entrance fee and he was ready to see the beautiful sculptures on the property. To our dismay and sadness after the hard work, we could not go around the park. It was not wheelchair accessible and way too steep & unsafe. Why is such a public place not accessible? When will the workers understand that we also need accessibility. We are human also.

The biggest struggle in my life is feeling abandoned by the system. Not every senior is resourceful to look for online help. It’s taken me a long time to find workshops to help me deal with issues. I would like a central system, easy access and easy to comprehend all in one place for handicap and seniors.

I have volunteered all over the world and now that I need help, as a senior, I feel totally abandoned. All seniors are looking for better community care, and we don’t want to be forgotten in the system. We may be seniors but we still want to have quality of life. We should also be prioritized in the lineup system. Waiting in line on our feet is extremely difficult. Many avoid going out because of the hassles out there. We have been forgotten in the system financially and resourcefully. I try and stay positive but at times, due to lack of care, I lose hope. We need major changes for disabled and seniors. We are humans and we count”.

12/17/2021

"I have a genetic hearing loss. From birth until 2 or 3 years old I had normal hearing but this gene triggered the hearing loss in both ears at a young age. I have hearing loss with lower tones, so I can hear female voices much better than male voices. It’s opposite to the aging process where people tend to lose hearing in the higher pitches.

For me, it’s an invisible disability, so most people don’t assume I have a hearing loss, especially because of my age, and for many years I never disclosed it to anybody. I just hid it, but of course, when you get to know me, then you may notice the hearing loss more.

The COVID-19 pandemic has been the hardest part with my hearing loss and accessibility because now we have to wear masks and use those glass barriers. At cash registers, there’s glass/plastic that’s blocking the sound waves coming through, and especially when people don’t speak up it’s stressful. I lip-read and watch body language more than I thought, so now that I can’t see this, it’s become a barrier, especially at work or dealing with the public. So this year was the first time I told Affinity Health’s Executive Director about my hearing loss and they accommodated me.

I’d like the community to know that people can have hearing loss at any age and to protect their ears. Sometimes people have their music too loud so be aware that you can develop hearing loss. I wish people can also be more accommodating to people with hearing impairments; to not mumble and talk directly to people. Write down what you’re trying to say if they really can’t hear you!"

12/09/2021

"I have never let my differences hold me back. It is often others who tell me that I can’t do something, but it is never something I tell myself. I used to be a clinic manager and a pediatric physiotherapy/ occupational therapy assistant, but I’m currently studying therapeutic recreation at Algonquin. I also own a small business called Localove. I'm hoping to use this business to incorporate more accessibility into our community.

I have a lot of friends that are on the autism spectrum. Some of the best business owners are neuro-divergent. However the business world is not very accessible for people with cognitive differences.

With ADHD I often jump into things without considering the consequences. I’ll have this great big burst of energy, want to change the whole world, and start taking on huge projects. But then the “future me” needs to deal with all of the work that entails. Some days are great and others I struggle just to get simple things done around the house. Because I work so hard, people are often surprised to hear that I struggle. What they don't see is that I need to overcompensate on my good days, because the bad days are so challenging.

I wish that people wouldn’t be so quick to judge others. If you don't understand why somebody is acting in a certain way, it is probably because they struggle with something that you have never had to experience. They need to compensate for a world that was not built for them. If everybody, not just those with differences, put in a tiny bit of extra effort just to include others, it would make a huge difference in our community, people’s lives and the overall accessibility in our city.”

11/18/2021

“My name is Aaron. I suffered some physical injuries after a car accident in 2010, but they are far outweighed by my mental/emotional disorders: BPD, PTSD, panic & anxiety disorder, suicidal ideation. The picture above is important to me because it shows me as a small business owner overcoming adversity.

I’ve experienced trauma since childhood, so difficulties with my mental health have been a life-long struggle that have had both physical and emotional repercussions. I’ve been on medication since I was 12 which has affected my memory and motor functioning. People look at me and think I’m in good shape because I used to do bodybuilding, but they can’t see that I feel like “Humpty Dumpty '' because of my physical issues and how pharmaceuticals have affected my self-confidence through memory and relationship problems.

Barriers I’ve encountered are public ignorance and stigma in relation to people with mental illnesses as well as a lack of support and funding. For example, when using the crisis hotline the police are often called when all I want is somebody to reach out to—we need better staff training and more compassion. I feel hopeless as health care providers tell me that I’ve exhausted all options and can’t be hospitalized anymore.

Access to healthcare has declined in the past decade due to higher wait times and personal experiences with misdiagnoses. Ottawa needs to increase funding to mental health care by adding more facilities and trained staff as the wait times are long—often taking years. Since COVID-19, I worry for the people who go undiagnosed due to its effects on our healthcare system and policies.

To me, accessibility is being able to openly talk about disabilities without feeling outcasted or receiving an exaggerated response when asking for help. I’d like the community to consider what it’s like for people living with these ailments and to think about how hard it is for some of us to survive.

I’d like to see improvement above and beyond just accessibility. I would encourage people to become proactive and unified in order to draw more attention to mental health and to bring about change as it’ll take a country together to make a difference.”

11/11/2021

“For me, I have an invisible disability. I was born with what's called a high imperforate a**s so I was born without the actual a**l opening. So they had to create one at birth, and I was also born without sphincter muscles. So that is led me to live with chronic f***l incontinence.

Public transportation has always been incredibly difficult. With the light rail system for somebody like myself, how comfortable am I going to be going from stop to stop without bathrooms being available. They decided to put a washroom at each end - that doesn't necessarily help somebody that is living with incontinence.

Outside of the pandemic itself, it's always been a struggle to have to almost beg to use a washroom, I'd like to see that change and just have businesses really be good neighbors. Restaurants and retail could register and put a sticker in the window and it would be very subtle, you know, it's not going to have a neon sign that says incontinent people welcome, but it's subtle stickers.
Quite frankly, for any business that has ever allowed me to use it on an emergency basis. I remember those businesses and frequent them more often than others. So I think there is a win-win situation when it comes to allowing accessibility to your facilities.

What I've learned is, as difficult as it is, the more people that you tell - the larger your support group becomes, the better your life is going to be. The better chance you're going to go out and do the activities that you love to do and it's just gonna make your life so much better. It's my 100% guarantee.”

10/22/2021

Thank you so much to Chris Vallée from AMI for speaking with us!! And thank you as well to Vincent who is one of our amazing volunteers/Able Humans, & to Kierstyn - one of the original student leads on this project (and now RN!) ❤❤

https://youtu.be/tjc5AeD6guI

Chris Vallée learns about a new online Facebook group called Able Humans of Ottawa, a storytelling space for Ottawa’s disability community.

09/27/2021

Do you live with a disability or chronic illness? Neurodiverse in a neuro typical world? Have you faced accessibility or accommodation issues in Ottawa (or have an amazing employer where this isn’t an issue at all!)? SHARE YOUR STORY!!

We have 4 amazing University of Ottawa BSc.Nursing students working on this project again this semester and they want to speak with YOU.

About: Based on the famous Humans of New York (HONY) personal story-telling, Able Humans of Ottawa is talking about all things related to accessibility, inclusion, disability, ability... the good, the bad & everything in between!

Through your stories, we're hoping to create a more understanding & inclusive city.

Please comment, share or send a DM and we'll connect you with these awesome nursing students!
Cheers 🙂

08/05/2021

👇👇👇

08/04/2021

We're on Instagram! YAY! Please give us a follow or share.
https://www.instagram.com/ablehumansottawa/

We'd love to hear your story - please connect anytime

08/02/2021

"I'm a business coach and I love that I get to work from home and independently. I love helping to support other business owners who struggle with how to make things work when they think the only way to be successful is to just hustle harder and work more.

I had undiagnosed ADHD and undiagnosed endometriosis until I was in my 40s. And my whole life I struggled to figure out why it seemed like everybody else could work more than I could and didn't seem as tired. I couldn't figure out how to be an adult the way I thought I was supposed to be. With the ADHD, the executive dysfunction, not being able to prioritize properly, being easily distracted; all of those things on top of being so chronically tired with constant migraines and a lot of pain - I thought that was just kind of life. I couldn’t figure out why was everybody else not like this? Life seemed easier for everybody else.

The reason I like to talk about both (ADHD and endometriosis) is in both cases talking about it has made other people realize what's going on with them. And the sooner people can realize what's going on and start to figure out what to do about it, the better off they're going to be. I get private messages all the time from people asking, ‘where do I go to get assessed for ADHD?’ or ‘I've been thinking about hysterectomies, but I've been scared…’. I get so many private messages from people who don’t feel like anybody they to talk to knows what is going on.
And so that's why I think this kind of stuff is so important. ADHD is always a challenge. It's a challenge for helping make a family run smoothly. It's a challenge for following through on goals in business. It was a challenge with managing my endometriosis in some ways but also a bit of a gift because hyper focused on how to get the thing that I wanted, because I knew it was important. So yeah, managing life with ADHD is tricky. I feel like I’m always trying to figure out if I’m I prioritizing the right things. And then being exhausted. And wondering how to be a successful adult when I’m tired all the time? That's not how they promote being an adult or a successful entrepreneur – both of those are things that we’re told require hard work, focus and planning.

So I’ve learned that you need to trust that you don't have to be all the things you thought you had to be to be successful. Even if you're disorganized, even if you can't or don't want to hustle harder. There are so many ways to use the way your brain works, and the way you do things best and to follow what you love, that will work without having to stick to what you thought the rules were - and what everybody always told you was supposed to be.

That’s really what I most want people to take away from my story, so much of the stress comes from feeling like you’re not measuring up - so change the rules and expectations for yourself and things start to work so much more smoothly!" 1/2

08/02/2021

"My endometriosis diagnosis came shortly after my ADHD diagnosis, when my disease flared out of control and landed me in the ER. I actually feel like I'm one of the lucky ones, because once I figured out what was going on in my body, I took action - I really pushed, and I got results. The sad story is actually that I lived with pain and discomfort for 30 years that was explained away as normal and part of “life as a woman” and that’s the reason I talk about this so much because we need to get rid of the taboos around periods and pain and start making sure the medical and research community start finding solutions.
My disease was serious enough that once I got a diagnosis I got surgery in under a year (many wait years and years), but the diagnosis made me realize that for almost my whole life, basically from the time I was a teenager, the difficulties I’d been having could mostly be tied back to endometriosis. Extremely painful and heavy periods, migraines that started in my mid 20s, extreme exhaustion and anemia, a burst ovarian cyst in my early 30s. I can see dozens of examples where I went to the doctor, and nobody knew how to put together that the root cause of everything was endometriosis.

It's not like I think doctors are being malicious, but they're honestly not taught about it. At least 10% of people with uteruses have endometriosis, so how are you not taught enough about this? My doctor told me he could get paid more to deliver a baby vaginally than to do a five-hour surgery on endometriosis. There's no reason for people to go into this field, so there aren’t enough advances being made.

My organs were unrecognizable by the time I had surgery – it was just a big mass of gunk. I think partially I have a high pain threshold and a high pain tolerance, so I made it a lot longer than other people would have but even that first time when I went to the hospital because I was in so much pain, I only went in because I thought it would be stupid if I died. Not because I thought “I can't handle this” – because I didn’t want to die. I think in general women’s pain is minimized and we think, what's the point? Going in just for the pain doesn't seem to make sense. The only reason it made sense was to make sure I wasn't dying.
No wonder people lose hope and get discouraged and feel like giving up. If I hadn't done my own research, and then decided who I wanted my doctor to be, and then made a pain in the ass of myself until I got in to see that doctor, I would probably still be in pain. I did not have a pain-free day for over 6 months, all while being extremely anemic and was bleeding nonstop. There were moments when (I am sad to admit) I thought “I wish this was cancer because then maybe they would DO something!” It wasn’t OK, and it wasn’t normal, but we don't talk about periods. It's gross. Right? I just wish people would talk about it. I wish people would make sure there’s research dollars going towards helping those with endometriosis and that the education overall to medical professionals is better, so there can be empathy when you get in and start asking for help.

And I want people to know that they know their body best. If you don't like when a doctor says something, it's not non-negotiable. You have the ability to ask for what you want, and to ask for a second opinion. I've had a full hysterectomy now - they took out an awful lot of stuff in my body so that I could not be in pain all the time, but the disease is likely still there and I’m still going to keep talking about it." 2/2