Thesis dreaMS Part 5 – reflections of a slightly mature disabled PhD student.

A coming together of generations

Also known as the week I felt my age.

Looking down library bookcases

Look at this beautiful place! In my day, these were the places that were full of people studying, because books were the way to get the knowledge that others had written. Not anymore! This part of the library is upstairs and rather empty, while downstairs is full of computers. Lots and lots of them. I like books. Add a couple of Bernese Mountain dogs and a load of chocolate to this picture and I’m in heaven. I found the book I needed. It looked like it had never been read before. There’s something very exciting about actually finding the book you want on the shelf in the library. I like books.

This week, my 9 year old granddaughter came to stay. She started at her new school and talked about the research she was doing for her science project. A lil researcher in the making! Her mum took photos of our respective backpacks – guess which is hers and which is mine…

A blue leopard print backpack with sparkles and a plain grey and black backpack

My granddaughter went to enrol in the local library and was so excited when she was told she can take 100 books out at a time! Can you tell she’s my granddaughter? I was equally excited when I was told at the university library that I could have books out for longer because I’m a graduate student! I like books.

In one course, we discussed a reading, and a student commented on how difficult she had found it because it was history and she had to look the context up. I thought it easy because it was so relevant that the context could be seen as current affairs. Ho hum. I’m old.

I ordered a whiteboard/flip chart stand that arrived while my granddaughter was here. Yes, it’s large, and yes, I’m sure it’s not ‘normal’ to have one in your living room, but who wants to be normal? My granddaughter got it ready for me before she left:

Whiteboard with one line handwritten in black: Assignments for PhD students

Nice of her to get me started!

Thesis dreaMS Part 4 – reflections of a slightly mature disabled PhD 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!

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.