Thesis dreaMS Part 4 – reflections of a slightly mature student

Another day, another challenge or two

Today I had my other class for the first time. It’s earlier, and the buses just don’t line up nicely. I was exhausted before I even got to class. One of my classmates from the other course who happens to be a nurse was quite shocked when my speech went to its slurry and broken form!

However, I met another wheelchair student on the bus. It was a great moment of kinship! We shared challenges we have on campus and he also brought up trying to get across campus during the student club event. There’s always two aspects to any use of space – how it’s designed and how it’s used. In this case, the use part failed.

In my ongoing quest for the perfect loo, I found it! There’s a button to open the door and a button to lock the dock that shows everyone it’s in use. Finally! A loo I can feel comfortable getting in and out of.

The buttons next to the washroom door - large square buttons. One say push to lock and the other is the standard automatic door open button

I have also been given a list of other loos on campus that are meant to be to the same standard. We will see. Going to the loo is something we all do, but we don’t talk about it publicly, usually. I’ve heard access to washrooms called the next civil rights issue – transgender people and disabled people share a common need to have washrooms available to us. Hence, I go on and on about it. Please feel free to take up the cause too!

I spoke in the previous post about missing the Disability Studies world. It’s a huge step to be away from the Ryerson Disability Studies department. There’s not been a single mention at the start of the courses of anyone’s accessibility needs. We all have needs of some kind, and universal design means that what’s good for disabled people will benefit more than just us. In today’s class we had a discussion about the positive attributes of podcasts. I felt such an oddity when I had to point out that deaf and hard of hearing people can’t hear all these nuanced features people were bringing up, and that some people are visual learners and don’t do well in a purely aural environment. Yeah, not the fun-filled accessible thing everyone is making it out to be. Hey ho, I guess there’s a whole load of education going to happen for some people!

At the bus stop, I overheard a conversation between two people where they discussed how many classes they had missed and how they felt about it. It’s only week 2. “Guest lectures? Pointless. They’re not going to be on the test.” “I’ve paid to be here, so I can choose not to go to class.” I wanted to give them some “advice” but it was engrossing to listen to their views on their education. One of them missed their bus because they were in the wrong place. I guess that wasn’t on the test. Spending most of my time at home, and travelling by van, for the last 11 years, I can’t say I’ve spent a lot of time in the company of strangers. I forgot that people watching (and listening) is so very interesting

I took a new route home. You may remember that there’s no bus to get me from the halfway point. It’s just over 5km, but Google tells me it changes in height by 194m. It’s steep! And that takes battery power! It’s also quite exposed to the elements as it goes alongside the highway. It took 35 minutes which isn’t a bad option if the weather is cooperating!

Me, on a path next to a highway.

I have a number of different assignments to do now… yum!

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Thesis dreaMS Part 3 – reflections of a slightly mature disabled PhD student

The day I almost got wet

Setting out from home at something that has 7 at the front means that the weather is significantly different then than it will be later in the day. I began the day with 3 layers, hoping that I wouldn’t have to add a raincoat as a 4th layer. The skies were dark. Just as the bus approached the stop sign down the street, the first rain drops hit me. Almost wet, not quite.

Fast forward to my class, and my first presentation – introducing an article, and following that by leading a discussion. In the middle of my presentation – fire drill! Everyone left down the stairs. I waited where those of us in wheelchairs usually wait (close to the staircase), and was then told that the level I was on had a flat exit to the rear. I asked where they would like me to wait, and was told “wherever you feel comfortable”. I decided that was next to the fire hydrant, because it seemed to be a good plan to be next to the water in the event of fire. Alas no. No fire, no water needed. I stayed dry for another day.

My fire hydrant

I wore my dockers, and wasn’t alone. I’m down with the cool kids.

Feet of someone at the bus stop, also wearing Doc Martens

Accessibility is still a work in progress. The classroom door is too heavy for me, the washroom door too. I will find the right people to address that, or find someone with a screwdriver willing to back off the pressure on the door closers. I’m learning the pathways around what is a very small campus, with a central courtyard. Today was the day to introduce people to clubs – medieval club in a wheelchair, maybe? – and the whole of the sloping route through campus was double lined with tables offering up all manner of things. I wanted none of them. All I wanted to do was to get to the bus.

The bus. I realized there’s a display at the front that announces the stops, and also has some service announcements on it. If you’re in a wheelchair, it’s behind you. We face the opposite way to everyone else. Another work in progress.

Me on the bus, looking perplexed, because the electronic message board is behind me

I’m enjoying the reading, enjoying the courses, but missing being surrounded by like-minded disability studies people. It’s a challenge I’m up to. The Disability Studies world supports you in the right places and challenges your mind in the other places. Not being in that world is taking some getting used to.

Thesis dreaMS Part 2 – reflections of a slightly mature, disabled PhD student.

Day 1

I’m not going to keep this up, but it was day 1, so here’s some more thoughts.

Last week someone told me that we were going to be good friends because we both have grey hair. It felt so good, not, because one of my neuroses over the summer has been how old I’m going to be compared to everyone else. It’s not that grey, is it? And, am I allowed to be friends with people who don’t have grey hair?!? So confusing. I never understand all of these social friendship rules at high school – clearly, I’m not any further ahead now. (Ahead… geddit?!?)

My brown-ish grey hair

A different neuroses that has literally kept me awake at night, or woken me up, has been that on the first day of classes the buses are going to be overflowing and I’m going to struggle to get to class on time. Every year it seems to be one of those news items – back to school, slow down in school zones, university students complain because already full buses drive past them. On the way to the exchange, I couldn’t see a thing as I have to sit facing backwards. I got off the bus and…

Bus stops at the side of the street with no one waiting

No one. No one at all. Of course, then I started to worry that I was too early or too late! (Side note: I wasn’t)

When I arrive at the university, I have to go inside a building and take an elevator up one floor – people who walk take this big broad flight of stairs outside. I pushed the button to open the door, and as I tried to go through, it started to close on me. I backed up. I presumed I hadn’t hit the button hard enough, so I smacked it one, and the same thing happened! Third time, I just used my wheelchair footplate to bulldoze my way through. First office, opposite these doors? Facilities maintenance! In I went – “hi – you have a door that’s not working properly here. Do you have a frequent visitor card, because I have a feeling you’re going to be seeing a lot of me?” Okay, I didn’t say the second part, but, hey, they will get to know me.

My class is in a newer building on campus, and boy what a difference. The loo is a thing of beauty! No demolition will happen this time! All the doors are too heavy – classrooms and the loo – and the building is too hot, but it’s definitely what I would expect in any usual building, in terms of accessibility. I know you want to see the loo…

Accessible toilet in a huge space

And all this before I even got to class! Such are the trials of a disabled student!

Class was lovely. Just 6 of us students and the instructor. I’m sure I did my first master’s degree before some of them were born, but hey, I bring experience! And, as I had done my homework, I bring words. Lots of words! I explained that I would be needing to record one part of the session each week, when we discuss readings, because taking notes and listening and thinking were all too much for me, and everyone was fine with that. In fact, the other students were interested in having the recordings too! Universal Design in action! If it works for a disabled person it works for everyone!

I stayed awake all class. To be clear, I wasn’t worried about falling asleep from boredom, but the class is 3 hours and ends at noon, and with fatigue like mine it’s really pushing it in terms of my limits. But it was all good. Probably adrenaline as I’ve slept like a log all afternoon.

After leaving class, I went to wait for my lift home. It was definitely busy out there! People! Cars! And, one special little truck that decided to park in the hatched area between two accessible parking stalls. Emails have been sent.

White pick up truck parked in an a hatched area between two accessible parking stalls.

So, there we have it! Day 1 – and in terms of physically attending the university Week 1 – done! I’m getting into the groove of getting there and getting around, and maybe now I can settle down to studying stuff. And good stuff at that.

Thesis dreaMS Part 1 – reflections of a slightly mature, disabled PhD Student

Preparations

Over the last few months I’ve looked back at my decision to apply to do a PhD as an act of momentary insanity. As the start of school approaches, nerves have grown and preparations have been intense.

Back in the day, when I did my undergraduate degree, I really fancied a pair of dockers – Doc Martens. Of course, I couldn’t afford them. They may look like the shoes of the revolutionary, but unless that revolutionary had a fair bit of money behind them, dockers were never going to happen. And then life got in the way. What does a grown woman in a grown up job need dockers for?!? Now, it’s sensible! I’ve got to go out in cold and wet weather! And, I continue to drive my toes into all manner of things, so they’re for safety. And, they were on sale. Outfits are now being chosen on the basis of whether they’ll go with the dockers. Phew. Important stuff taken care of.

Brown sweater, orange leggings and a Doc Marten boot

Over the summer I read and read and read, and I made sure that the post-it company was kept in business. Who knows what the idea was that made me want take note of all those separate comments, but it looks impressive.

A stack of over 20 books with many small post-it’s on their pages

Other important considerations include getting to the university. Not being able to drive myself, I am reliant on others. Being the control freak that I admit to being, arriving late to school is not an option, and waiting to see if someone else has overslept has more worry attached to it than necessary. With my university fees comes a transit pass, so I decided to investigate the bus. The first time I look the bus, I decided to make a video of the experiences.

To be fair, my plan had always been to get picked up at lunchtime each time I’m at the university, because with my severe fatigue I could see me falling asleep on the bus and ending up somewhere else entirely. However, I thought I’d investigate getting home for those days that I “pop in” for a short meeting, rather than the full 3 hour class. Nope. Not happening. There’s no bus home for me for a 3 hour window right when I need one.

The second time I went on the bus was no less interesting. Not only was there no other passengers, so I was left facing an empty bus, but the door wouldn’t close. Additional AC?

And then, like many people not least those in wheelchairs, my concerns went to going to the loo. In there, I encountered one of the least accessible toilet stalls I have yet to encounter. I looked around for the Candid Cameras (damn I’m old) and not finding them I decided to make my own video. Clearly, the stall was designed for the smallest wheelchair ever or amputees who can remove their prosthetics limbs. I’m glad I was in there on my own, because I was waiting for all the stalls to collapse around me like dominoes.

I guess I need to find a better loo. #priorities

My 11th Cake Day

Today is my 11th cake day – the 11th anniversary of the day my MS started. I choose to celebrate it, by eating cake, and taking the time to look back over the past year.

A large slice of carrot cake on a plate

This year has certainly not been the average year with MS, if any of the years have been average. You will notice that there has been a big gap in my posts to my blog, for a very good reason. In January Ian died from esophageal cancer, 18 months after his diagnosis. He never got to have those remission celebrations that some people who have had cancer get to have, but he certainly lived those 18 months in style and at full speed. I miss him every day in ways that no words could ever describe. I turn to tell him things daily, and regularly think I hear him coming in through the front door when I’m in bed in the afternoon. And, I hear his eyes rolling at me for some of the things I’ve done since he’s gone.

Ian and Lacey staring at each other

January was awful in many ways. My dearest friend’s mum died too, just 13 days before Ian, and we lost a cousin and dear friend too, all in the space of 15 days. The rest of 2019 did its best to stamp itself on life in many tough ways, not least with my mum’s stroke, but, as ever, I am determined to look for the positive and see the learning that has happened this year.

So, heres’s some things I’ve learnt.

I’ve learnt my limits even more clearly. While my body continues to remind me when I must stop, I continue to push my boundaries. I’ve learnt to add as much technology into my house as I can, because sometimes even not having to reach for a light switch can be a relief.

I’ve re-learnt what I like to eat. It sounds odd, but when you live with someone else you compromise, and particularly with Ian’s inability to eat certain things, there were more compromises than usual in recent times. So, now I eat what I want, when I want. And boy it is good!

I’ve learnt when I need assistance, and what for, and what I don’t need assistance for, and that I can live on my own really successfully. I’ve learnt that the big cast of people who support me are wonderful, generous and bring joy into my life, and it’s good to enjoy their company. And some people, well one person, is simply incredible and there are no words to describe the support she gives me.

I’ve learnt and tested out the ways that the furkids and I live together. We’re gradually getting more manners. Lacey continues to try to impose routines on me I don’t want, while Deefer finds new ways to need hugs. They’ve certainly given me untold support and love, and our bond is something I cherish.

I’ve learnt that my family, both those who I share DNA with and those that I don’t, continue to surprise me with the ways they show their support and their love, and I am profoundly grateful.

And, I’ve learnt I love silence. Being on my own, in my own home, with no tv, music, radio, for most of every day is bliss. Read, read, read, read.

The real reason I’ve chosen learning as the theme is that my learning, in an academic vein, is continuing, as this week I begin my PhD studies. I’m learning to challenge ableism in academic institutions, to find ways to make sure I get what I need, at the times my fatigue allows it. I’m nervous and I’m excited. I can’t work out which bits I’m enjoying more at the moment – whether it’s the physical things like catching the bus and finding that the accessible toilets are not accessible, or the actual academic stuff. Anyway, whatever it is I’m enjoying, I’m definitely enjoying it! And, because of this, I’m going to try to blog my adventures as a student. Not necessarily the academic-y parts, but the other stuff.

And my MS itself? Well, it’s still there – it’s definitely not going away – but I think it’s more stable. The roller coaster the rest of my life has been on has certainly made me more fatigued but when those extreme events pass, my body slowly recovers, and the routine of 8 or 9 hours a day out of bed, some in the morning, some in the evening, continues.

In the many different readings I’ve done over this summer, I’ve read the same sentiment from a couple of disabled people who have acquired their disability, like me, rather than being born with it. They are responding to the question of whether their disability is something they regret, and whether they wish they were without it. The answers I’ve read are similar to mine, and probably will surprise or even shock people. I’m going to try to explain it in my own words. Becoming disabled has made me into a better person, I think. It’s given me the space in my life to examine life’s inequities even more clearly, and to do something about them. It’s taught me all manner of lessons, only some of which I’ve covered here – would I want to be without those experiences? It’s an intrinsic part of who I am and it’s changed me in ways that I don’t regret. I’m not saying I enjoy being in pain, or that I relish my fatigue – far from it. But disability isn’t something that requires pity, or something that necessarily changes your life for the worse. It changes your life to something different – perhaps travelling on life’s country roads rather than on its highways. You kind of get where you want to be, eventually, or maybe you get somewhere else entirely. Either way, the journey is full of life and light, joy and laughter, and appreciating that is the best lesson of all.

Why don’t you see us?

In a recent episode of Will and Grace called “So Long, Division”, Jack, the gay guy, was arguing with his boss, a black guy about which of them was more oppressed as a minority. Over time, the narrative built to include Latinos, Muslims, Asians, all arguing over who was more oppressed. A voice spoke up, and no one could work out where it came from. A door closed, and Jack thought it had closed by itself. It was closed by an elderly woman, the point being that seniors are so oppressed as a minority no one sees them. A witty way to bring the issues of minority groups to a wider audience .

But do you know which minority group wasn’t there at all?!? Disabled people! As the group grew larger and the arguments for who was the most oppressed continued I looked for one sign of a visible disability – never mind an invisible disability. There wasn’t a wheelchair, a prosthetic limb, a white cane – all of the typical representations of disability – in sight.

We are so invisible we didn’t even make it into a script about how oppressed – and invisible – minorities are!

I’m honoured to have been nominated for the Woman of the Year award for the City of Kelowna, and amazed and humbled to be in the final three. The awards are announced at a ceremony at the Kelowna Community Theatre. Once I read that, I knew what was coming next. My seats for the ceremony are on Row Z! Not only the last letter of the alphabet, but the last row of the theatre. And, either on the far right or the far left – have a look in the picture, and the red oval in the far right corner. What message does it send when the City says “congratulations, you’re been honoured for your work in Disability Advocacy! Now, go sit on the back row in a corner!” I stopped attending events at the theatre after I went to a Great Big Sea concert, where everyone stood for the whole concert and I couldn’t see a damn thing. This is a common theatre experience for anyone in a wheelchair. We pay the same as everyone else, but we have no choice over our seat, which are always at the back, at the side, with bad sight lines. But this is an award ceremony, where I should feel as valued as the other nominees, but I’m left feeling as an afterthought, the person stuck on the back row.

photo of seats in the auditorium with highlighting on the far right of the back row

Gaelynn Lea is a disabled singer and violinist, who uses a wheelchair. She tours and has arrived at many venues to find green rooms in the basement and stages with stairs. As she says, “Didn’t you look at a picture of me?” She expresses one of my concerns well, in this article in The Guardian “We’re good at remembering LGBTQ and people of colour and women in our policies, but we have to stop leaving disabilities out of the conversation.”

Think through the times you hear a politician talking about how they support inclusion, and want to stand up against those who discriminate on the basis of the colour of someone’s skin, their gender, who they choose to love, their religion. It seems like the list is getting longer and longer. Missing from the list? Disabled people. The word ableism, or that people are discriminated against on the basis of their ability. We are so invisible that the words to name the discrimination we face are not even well known.

I’ve said this before, and I’ll say it again. We need allies. We need non-disabled people to say that it’s not acceptable for us to be forgotten and to be stuck in a corner, physically and metaphorically. We need more people than just us to speak up and say that disabled people cannot be invisible anymore.

Straws – just like single use plastics, the debate just isn’t going away

Over the summer I met with the two MPs that cover the Central Okanagan – Stephen Fuhr, the Liberal MP for Kelowna-Lake Country, and Dan Albas, the Conservative MP for Central Okanagan-Similkameen-Nicola. Amongst other things, I made them aware of what had happened with straws this year, and the impact it was having on disabled people. They both said that banning things wasn’t the way to go, that you need to be aware of the unintended consequences – and they both brought it up without me saying that! Stephen Fuhr offered to make it part of an SO-31, which is where a member gets to make a statement on a topic of their choosing for a minute. he said that this was exactly the sort of awareness topic that he liked to make.

Parliament has just gone back into session. On Wednesday (the 19th) Bill C-81 – the Accessible Canada Act – Canada’s first legislation directly aimed at reducing barriers for disabled people – got presented for its second reading in the House. Yay! On Thursday (the 20th) the environment minister announced that she was putting government contractors on notice that they were banning single use plastics from government contractors, including straws. The opposite of yay. Not yay.

So, I started to write again. First, to my MP’s staff, to ask them to get a message to him, which they did. He’s trying to get hold of the respective ministries himself. Then, I started to write my own email to Minister McKenna, Minister of Environment and Climate Change, and Minister Qualtrough, Minister of Accessibility. I post my response here so that anyone who wants to send their own email can pick out anything they like from mine. I suggest you include your own MP as well.

And the email addresses of the two ministers are

Carla Qualtrough – Carla.Qualtrough@parl.gc.ca

Catherine McKenna – Catherine.McKenna@parl.gc.ca

I cannot believe how much I have written about damn straws this year. Even this summer. Tiny little plastic tubes that bring such needed pleasure to me – for those that know me well, I have forsaken Coke Zero for water, flavoured with Crystal Light, Pineapple and Coconut flavour. Yep. A shock, I know. But not as shocking as the plight of disabled people and plastic straws. Who knew when the year began that this would be the thing that would take so much of my time and words. No more, I say. Stop being irrational, people, and let’s have some common sense!

Dear Minister McKenna and Minister Qualtrough

I am writing to express my concern about Minister McKenna’s announcement on Thursday 20th September, 2018, (https://www.cbc.ca/news/canada/nova-scotia/environment-g7-oceans-plastic-waste-catherine-mckenna-1.4831484 ) that the Government of Canada intends to ban all single use plastics from any contract involving the federal government, and that this includes plastic straws. Many disabled people, including myself, rely on plastic straws to be able to drink. While I recognize that we are at a crisis point with single use plastics, and that action needs to be taken, plastic straws are not a vanity use of plastics for many people, but a critical part of their hydration.

On Wednesday 19th September, 2018, Minister Qualtrough brought Bill C-81, the Accessible Canada Act, to the House for its second reading. This act aims to ensure that disabled people are able to live in a barrier-free Canada, and that as part of this, the Government of Canada will ensure that it conducts itself in accordance with this law. Clearly, these two government actions – the announcement banning single use bans and the Accessible Canada Act – are in contradiction to each other, and leads to an issue where the needs of a minority have been lost in an action designed for the majority.

While C-81 is not yet law, it would be hoped that the federal government would act in the spirit of it in the interim. However, Minister McKenna’s announcement means that disabled people who need plastic straws will be discriminated against when accessing federal government events with refreshments. And, where the government goes, others will follow, and plastic straws will be even less available. Hence, the success for one ministry’s policy may be easy to achieve, but will be in contradiction of another ministry’s proposed law.

This year, the trend to ban plastic straws gathered pace as the year went by. Even though the impact of of plastic straws on the environment is much lower than other single use plastics, straws represent an easy target to be the “poster child” to “save the oceans”. Most people can easily give up straws, and are lulled into a false sense that they have “done their bit” for the environment. It’s led to many comments like “no one needs to use a straw” and campaigns like #StrawsSuck.

For disabled people that rely on straws, plastic straws have no replacement currently. They’re robust enough to withstand jaw spasms but flexible enough that they don’t injure teeth and gums. Being single use means that their cleanliness can be relied on. They were so ubiquitous that disabled people knew that they could rely on them being available whenever they went out, both ensuring that they could remain hydrated in an emergency and that they could participate in ad-hoc social invitations to “have a coffee” with friends.

Since the call to ban straws has been so prolific, disabled people have been forced to defend their need to use plastic straws. There have been many op-ed pieces written by disabled people covering the lack of understanding that they have received. Myself, I have constantly been asked to explain why I can’t use paper straws, why I can’t use a reusable straw of some kind that requires cleaning, and so on. Some comments have been from those wanting to understand the situation further while others have bordered on abusive, such as “being disabled doesn’t let you off the same responsibilities that the rest of us have to the planet.” I have written a couple of blog posts on the issue, and give their links below. The second link contains an excellent table, not created by me, that explains why each type of alternative straw doesn’t work for us. However, having to explain exposes a fundamental issue for disabled people – do non-disabled people really think that we haven’t done the research ourselves? That we do not know what is best for us? It demonstrates a lack of respect and understanding for those with lived experience to have to respond to those without to that experience.

https://mssingabout.wordpress.com/2018/05/21/lets-ban-everything-and-damn-the-consequences/

https://mssingabout.wordpress.com/2018/07/14/straws-it-really-means-accessibility-and-respect/

As I mentioned, these issues have been written about by disabled commentators around the globe, including throughout Canada, such as this example from the Globe and Mail https://www.theglobeandmail.com/opinion/article-for-many-with-disabilities-plastic-straws-are-essential-not/ .

Banning anything is a drastic measure, and may be difficult to reverse. Before it happens, it requires careful study on who is going to be affected and what alternatives are in place. Instead of an outright ban of plastic straws, a common sense approach would be to have straws available on an “as needed” basis. Another approach I have seen suggested would be for a small number of plastic straws to be kept for those who request them, but then this runs into complications of advertising their availability, and also lead to situations of disabled people having to defend their need for a straw. Hence, greatly reducing our use of plastic straws throughout our communities and investing in technology to dispose of plastic straws responsibly, while still making sure that there is access to a plastic straw for those with genuine need is the common sense way to move ahead.

Ultimately, the best outcome for disabled people would be for bills like C-81 to be obsolete, with the lens of the lives of disabled people applied to every law and policy developed by every ministry, without the need for extra legislation. We are a long way from that. In the mean time, we need different branches of the government to work together, to have an awareness of the needs of disabled people, so that contradictions like this one do not happen again.

I cannot believe the number of words I have written and the conversations that I have had this year surrounding the issues related to plastic straws and disabled people, and I am only one of many. With cities like Vancouver already on a timeline to ban straws with no alternative in place, there are certainly going to be many more of these discussions. I look forward to seeing the Government of Canada recognizing that this is not a frivolous issue, and that the government will lead the way with a more nuanced approach that safeguards the needs of disabled people.

I look forward to hearing your response, and a solution to the proposed ban of plastic straws.