Ten years ago

Ten years ago today it was the Thursday of the first week back at school. As an elementary school principal, it was a very busy week, but my body seemed to be flagging.

On the Monday, Labour Day, the day spent getting all the muffins and juice boxes together for the welcome back breakfast, a final day in school making sure everything is in place, everything seemed to be okay. I was fit and healthy, but hadn’t been to the gym as much over the summer as I usually did (5 days a week, before school). By the end of the scorching hot day, I thought Ian had lost the plot! I was convinced the heating was on – and that he had put it on – because my foot felt hot! Then my pjs felt hot, then the bed felt hot! Just what had he done to the house?!?

On the Tuesday, it was the first day of school. My right leg was tingling, and I didn’t feel like I was going at full pace – I couldn’t keep up with people in the hallways. I decided I had to get myself back to the gym really soon.

On the Wednesday, I had a meeting before school, so no gym again. My right leg, in particular, continued to feel odd, and the left one wasn’t so hot either. I told Ian that I really had to get back to work at the gym, because of these odd feelings.

On the Thursday, I went to the gym! I could do things that involve my arms, but my legs just weren’t moving right. I went to work and told my secretary, just passing on how odd it felt. She rang her mum, a nurse, and she told her to get me to ring the BC HealthLine. I thought they were exaggerating, but I did it. I went through a kind of flow chart – is it this or that – on lots of questions. At the end of it, she said I had to go to see a doctor immediately. I said I had an appointment for some repeat prescriptions the next day, and I would bring it up then – that seemed like “immediate” to me. She insisted that I go now – I said “it’s the first week of school!’ – she insisted.

I left the office to go to the local walk-in clinic, with just my handbag, hoping there wouldn’t be a line-up, and saying I’d be back soon. Well, I made it back for a visit a few weeks later. I never worked more than 2 days a week again, and within 6 months I had finished work completely. I also never walked “properly” again, and was a full time wheelchair user within 6 months too.

My walk-in clinic appointment took me to the ER which led to being admitted and an MRI of my spine. That showed lesions, and the follow-up MRI of my brain showed more. It was transverse myelitis and MS.

My MS has been called aggressive, and progressive relapsing, but really the labels don’t matter. It has had 6 different types of disease modifying drugs, and showed them all disdain! It has developed a “rare and somewhat unique” type of physical and mental fatigue, which puts me in bed for at least 16 or 17 hours a day. In fact, it’s done a load of stuff which has been downright anti-social!

But this isn’t a tale of woe. This is a tale of what life can be, and of what has happened over the last ten years.

I have made friends who are supporters, shoulders to cry on, people to laugh with. I’ve made close, close friendships that are a joy to have in my life, and without them, my life would be empty. My family has always been there for me, constant, never ending support, that never wavers and brings me so much strength.

I’ve become an advocate for people with ms and for disabled people. I’ve found so many fellow comrades in these battles where we constantly, to use the in-phrase, “speak truth to power”. These women have inspired me to dig deep in myself to challenge the ways in which I approach “power”. To educate myself. To look at every situation as a possibility for change. And to enjoy the small positive changes when they happen.

I’ve rediscovered life as an academic, a student, a life of academic reading. And I revel in the connections, the people, the learning.

I’ve found that technology has become not only even more of my friend, but the indispensable tool that brings some equity into my world. It is always my mobility. It sometimes speaks for me when my voice doesn’t. It is my connection to the outside world. It locks doors and switches lights on and off. It allows me to take courses on the other side of the country, and interact with everyone in a meaningful way.

I’ve spent so much time with two Bernese Mountain dogs. The names have changed as time goes by, but the love and companionship has been never ending.

I’m not saying that having MS has been great and I’m glad it happened! Instead, the phrase “one door closes and another opens” has become the mantra for my life. And throughout it all, I have been felt overwhelming love and support to and from the man that started it all by turning the heating on, on a scorching summer day.

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Permobil M3 Corpus – my review

In January I got a new wheelchair – a Permobil M3 Corpus. It’s taken me a long time to write this review, because every time I went to do it, something happened, either to me or to the chair!

Me, sitting in the new wheelchair, outside on the deck on a wintry day

Getting a new wheelchair is not easy. It’s time consuming, from the first time you meet with your Occupational Therapist, to doing a trial with the chair, to trialling new cushions, to getting a quote, to submitting to your medical insurance company, to waiting for approval, to getting approval, to putting the actual order in for the chair, to the chair arriving, to the chair being delivered.

And then there’s dealing with the company that supplied the chair, who decide to withhold the cushion because they made an error with the invoice. Yep, really. And it took 4 months to solve. And came down to $112, which later became $12 that they “forgave” because they made a mistake. (I didn’t wait that long for the cushion. I got that a week after the chair was delivered to the store because I complained. The chair cost almost $40k, and we were quibbling over $112 that became $12 – and all their error. But I digress…)

And then the chair comes, and you have to get it just right. Heights, lengths. Length to the joystick. Tilt of the joystick. And you have to find where the screw is for the exact alteration – and can you do it yourself, can someone at home help you, or do you need to call the shop and get someone out. And then all the extras. Bags, chargers, iPad mount.

Finally, when all this is done, you can start to enjoy the chair!

Let the real review begin.

Pros

This chair really makes a major difference to my life. Accepting that I needed a wheelchair wasn’t a huge adjustment for me, and my first chair was wonderful. It was fast and agile, and robust. It had places to add things and I had tilt added to it when my MS got worse and I needed to tilt to help with my fatigue.

Increasing fatigue and stamina issues have brought weakness to my arms, and I can’t reach the same way as I used to. I have T Rex arms – mostly good movement from the elbows down! However, with the right tools, even T Rex is unstoppable!

The Permobil M3 lifts the seat up to 14 inches. I am still finding ways that this is useful. The obvious ways are to be able to reach things in cupboards at home and off shelves at home. And being able to talk to people over counters that are too high for seated people. But it also makes doing tasks in the kitchen easier. As I’m weak, my arms find it tough to reach up to stir a pan, butter bread, any of those types of task. By raising my height so that gravity is working for me rather than against me, I can complete more tasks. Here’s a photo of me stirring gravy – a simple task made much easier by being able to be higher than the usual wheelchair position:

And, of course, I can sit at those tall tables in pubs!

The Permobil M3 also adjusts in many different ways. Legs lift, the back reclines, the whole seat tilts.

Me, in my wheelchair, reclined, tilted, and with my legs elevated!

There’s the position that works best for driving around the house and fitting through doorways. There’s the position that just feels right for regular sitting around. With all of these different alterations, it’s hard to get back to that sweet spot again. The Permobil M3 has an answer for that. It has a memory function for 3 spots. Want to return to that “normal” driving about position? Press two buttons and you’re taken there. It’s an excellent function, because without it, you never feel like you get to the right positions again. For those who drive, the best analogy I can give is when someone else has sat in the drivers seat and moved the mirror. With the press of two buttons you get back to your comfortable driving spot and you can see out of the mirror!

Another excellent point for the Permobil M3 is that cables are hidden, switches are robust and things generally make sense. Flying with a wheelchair requires you to put it in manual, so that the ground crew can push it about without driving it, and to disconnect the batteries. All of this is really simple with this chair – and there’s no tempting plugs, switches or cables for ground crew to grab hold of or detach.

And the chair really is just like a big Meccano kit. With a couple of Allen keys and a screwdriver you can alter pretty much anything.

Cons.

First – it’s expensive. Really expensive. I’m lucky that my insurance covered, but it means that everything attached to it – repairs, replacement parts, you name it – is expensive. Want a light package for it, that’s not covered by insurance? $1800!

And it’s heavy. 400lbs compared to 350lbs for my previous chair. Heavy also means robust, but it also means you have to think through lift capacities for vehicles and so on that little bit more.

For all I have detailed just how flexible it is, when you find things that aren’t flexible, then it becomes annoying! It switches off after 30 minutes – and there’s no way of altering that in the set up. Being in a meeting, and then wanting to tilt the chair differently as my body becomes tired, means switching the chair on, and everyone hearing the “beep beep”.

The arm rest lift up easily, but also have no side panels. It can leave you feeling unsupported, if you’re used to having something there, with less place to tuck in blankets and coats in the winter. There’s also less places to add gadgets.

The cons of the chair itself, for me, have been very few. The cons for the accessories are huge, though.

When I ordered my chair, the company I was buying it through generously gifted a number of items that weren’t covered by insurance. The profit on a $38k chair was definitely worth it to them, even though their customer service wasn’t – another story, another time. However, let me outline the items in increasing cost!

First, the $88 cupholder.

Finding a place for it was tough, so we settled on the front. The first time one of the dogs tried to fit between the chair and a cabinet, the screw holding it bent. The cup part is too small for the water bottle I drink from all the time and the cup is rigid, meaning that full water bottles were unsafe in there.

Photo of black rigid cup holder attached to the front of the wheelchair

Solution? Replace with a soft climbers chalk bag and/or an insulated water bottle holder. Cost ~$20.

Water bottle in a soft pouch shaped like a fluffy orange monster attached to the front of the wheelchair

Next, the $252 underarm pouch.

I was excited by the thought of this and underwhelmed by it in reality. I was looking forward to an easily accessible pouch that had some security, being under the arm rest, for those time when you’re on the skytrain and so on. Instead, $10 of black canvas made a hard to access, tiny pouch, that barely holds anything! One day, it caught on a door as I was going through it and the whole flap ripped off.

Black canvas pouch, roughly 8 inches by 6 inches, with the word Permobil in white, hanging under the arm rest of the wheelchair

Solution? Replace with a pouch that can be removed and stowed securely, and closes with a zip, printed with my own artwork. Cost – $20.

Blue pouch with large dog logo hanging from the side of the wheelchair by a carabiner and a strap

USB port – $209

Under one arm rest there is a USB port, for charging mobile devices off the chair’s battery. This capacity is a game changer, particularly when your iPad is your communication device and your iPhone is your safety lifeline. And, in meetings, it’s how I take notes. Well, first off, for someone with dexterity issues, it’s really, really fiddly to get the connector in. I ended up having to lift the arm rest up most times – not the most surreptitious way to do things in meetings. Then – remember the chair shutting off every 30 minutes? Well, that means the charger shuts off too. Long meetings, the need for a charge, often switching between devices, and then it goes off? Nope. Not much use to me.

Small black box suspended under the arm rest, with a USB port in it

Solution? I went back to my previous charger from Crippled Concepts, a disabled designer in the US. Since I bought mine years ago, it now comes in a fancy lil case! Most importantly, the charger doesn’t shut off when the chair switches off. Equally, it’s on the left arm of the chair, closest to my iPad, so it keeps the cables over there, rather than trailing across my body, as would happen on the right side. Cost – $50 US plus shipping

Small black metal tube, with three pins in the bottom - the iPad charger

Charger plugged into port on console, with cable attached to iPad

Backpack – $272

This backpack hangs from two hooks on the chair – hooks that are slid into the back structure of the chair. The hooks are very useful! The backpack – not. It’s a semi-hard shell, with a zip that goes around 3 sides of it, and splits it in half. I use my bag on the back for the jacket I want on or off, the bits of shopping I pick up, the empty reusable shopping bags, a binder or clip board on the way to a meeting. It’s not possible to use the backpack for any of these things. A binder, perhaps, but then it’s full!

Solution? Replace with a tote that can be easily accessed, and easily removed, printed with my own artwork to match my pouch. Cost – $20.

iPad mount – $489

The Permobil supplied tablet arm and mount is over complicated, over priced and does not work. There was no position where the arm rest would lie flat because the upright was too long. The iPad arm is in a fixed position. To move it out of the way, it flops out perpendicular to the chair. This really isn’t practical if you are eating in the restaurants – the iPad is at kicking height for everyone who walks past. The mount itself is a RAM X Grip tablet mount which means that the grips stand up by roughly an inch. It makes it really difficult and uncomfortable to try to type, swipe, touch on the screen – all of this for someone with limited dexterity.

Close up of iPad mount, with protruding grip, and the wheelchair console balancing on the mount

Solution? A piece of copper pipe, sprayed black and a squash ball to make the lower bracket work, and my old mount – the excellent TabGrabber, which is flexible and robust enough for me. Cost – $75 US plus shipping

Small copper pipe, painted black, with a squash ball on the top, and the lower end of the TabGrabber attached to it.

TabGrabber arm attached to the iPad

Since I’ve had the chair I’ve also had something break – one of the flappy paddles that changes speed just came off in my hand. If anything, I’m light on things like that. I don’t have hand spasms. It just came off in my hand. It was covered by the warrantee, but took over 3 weeks for the part to be delivered – it only came from Nashville?!? How come Amazon Prime delivers in 2 days, but medical supplies take so long?

I’m really pleased with the chair. It did take months for it to feel like it was molded my shape and my needs – the head rest tilted slightly, the console tilted in slightly. It’s quite the thing to see people’s reaction when I sit at the big tables or go up to get something off a higher shelf in a store! The ability to recline, put my feet up and alter my position in a million different ways has made a huge difference to the amount of time I can spend at dinner or in a meeting before my body finally gives up. The add-ons are a huge let down – if you have to pay for them yourself, don’t bother them. In fact, even if someone else is paying for them, don’t bother, because they just end up taking up space at home. However, the add-ons are a tiny fraction of this chair. It’s well built, robust, adaptable, and (mostly) has the customer in mind!

Straws: it really means accessibility and respect

This is a long post, but I really need you to read it. It’s about straws, again. Yes, straws. But it’s not about plastic versus paper, or the environmental impact, or which multi-national conglomerate is changing their straws, or which city is banning them. It’s about two fundamental things that we all need in our lives, and disabled people have to demand, repeatedly: accessibility and respect.

When most people think about accessibility, they think about ramps. Without a ramp, people in wheelchairs can’t get in to a certain building. Maybe, they think about services being available in Braille, or ASL interpreters at public events. Having access to a plastic straw is exactly the same. On the pleasant end of the accessibility scale, it means knowing that you can meet someone while you are grocery shopping and deciding to go for a coffee, and not having to carry a bag of straws with you just in case. On the dangerous end of the scale, it means knowing that you won’t become dehydrated if you forget to take straws with you because there’s no way for you to drink while you are out. A couple of months ago, it wasn’t even a thought. The accessibility was there – plastic straws were everywhere. Already, they’re disappearing, often without any thought of the consequences to the people who need them.

Respect is lacking in the lives of disabled people. I’m sure many of you have heard about the “does she take milk in her tea” syndrome, where the person accompanying the disabled person is asked questions about what they need, rather than asking the disabled person themselves. We deal with it constantly, from the interpersonal level to the systemic level, from friends and from governments. However, we deserve respect because we are the experts. We have what’s known as the “lived experience” – we are experts in our own lives. We research. We problem solve. We network with each other. When we say something doesn’t work for us, we know that something doesn’t work for us, because we have tried it and failed, and moved on to find the better solution.

In the various networks of disabled people I’m in, I’m hearing the same themes. Disabled people who use straws are frustrated. They’re tired of having to explain themselves, to explain why one type of straw doesn’t work over another. They even come up with nifty charts that explain it all, like the one below. Hell, I’m frustrated and tired of explaining it over and again. We don’t need to be told that we all have to do our bit to save the environment – our accessibility need to drink comes first, and our impact on the environment is negligible. (There I go again – explaining.) We don’t need to be told have you heard about this type or that type, because we have and we know what works. And we don’t need to be told that we have to take our own with us. We carry a lot of kit with us – what next? Plate, knife and fork? Yesterday I read a post that someone said that they were tired of listening to ablesplaining. What a wonderful term. You’ve heard of mansplaining? Where men explain things to women, particularly things they have no knowledge of like period pains and pregnancy? Well, ablesplaining is where non-disabled people, able people, explain things like straws to disabled people. It really signals the frustration when we have our own term for it.

What we need is non-straw users to be our allies. An ally is someone who works with us, to support us, to listen to us and to act how we ask them to in our support. Since I became disabled, lots of people have said that they wish they could do something to help me. Well, here it is.

– Promote our position among other people. When you hear people talking about the straw ban, explain the position of people who need plastic straws.

– Respect our position. Don’t ablesplain. Don’t suggest that because Bill’s second cousin’s cat had no problem using a metal straw and keeping it clean, we all should.

– Read articles by disabled people. There are opinion pieces in every major news outlet on this that I’ve seen, in Canada, the US and the UK. I can provide you with many links.

– Share posts like this one, written by disabled people who use straws. When you do make sure it’s accessible. Underneath this article you will see the table explained in words. Why? Blind people often use screen readers, but those screen readers don’t read tables or photos or diagrams.

I have gone from being a #StrawWhisperer to a #StrawWarrior. Please support my position by sharing this post.

[image description: Infographic, first block of text reads “Many disabled people need plastic straws to drink, eat, take medications, etc. Here’s how current alternative, reusable options are a harm to us.”

Text from table reads “Metal: injury risk, not positionable, costly for consumer, not high-temp safe. Bamboo: injury risk, not positionable, costly for consumer. Glass: injury risk, not positionable, costly for consumer, not high-temp safe. Silicone: not positionable, costly for consumer. Acrylic: injury risk, not positionable, costly for consumer, not high-temp safe. Paper: choking hazard, not positionable, not high-temp safe. Pasta: choking hazard, injury risk, not positionable, not high-temp safe. Single-use: (no risk listed).”

Second block of text reads “Pressure to create bio-degradable straw options that are safe for the environment and for all disabled people should fall upon manufacturer, not marginalized disabled consumers. Once we accept the necessity of plastic straws, we can work together on other environmental initiatives that are effective, inclusive and accessible.”]

Table describing various straws and the issues with them. Full description in the blog text

Let’s Ban Everything – and damn the consequences!

Concern for the planet, and the oceans particularly, has led to calls for single use plastics to be limited and/or banned. The poster child for banning stuff, at the moment, are plastic straws. Some municipalities are moving ahead with a ban without an alternative in place, creating problems for disabled people who have to use straws to drink. But it’s not the only thing that’s being banned without thinking through the consequences. It’s time for cooler heads, and common sense, to prevail.

The news is filled with the damage we have done to the planet, and nothing gets more coverage than the oceans. From the dying coral reefs to the plastic found in the oceans and on our beaches there is definitely a crisis that we all have a duty to act on. The images are heartbreaking. Sometimes, however, our actions don’t meet the facts or solve the problem.

Let’s look at the problem of plastics in the ocean. According to NOAA, while the idea of an island of floating plastic waste might be create a mental picture that’s easier for us to comprehend, it’s not really like that. It’s more confluences of material where the ocean currents take it. And what do those patches of “peppery soup” contain? Micro-plastics, definitely, but a lot of waste from industrial fishing. When it comes to garbage on beaches, the impact is more directly caused by individual human actions. The Ocean Conservatory’s beach clean up reports that the most found items are cigarettes.

Ocean Conservatory poster listing the most found plastics on beach clean ups. Straws are number 7.

When it comes to a ban, momentum is currently behind the plastic straw – the one use type given in restaurants and fast food places with free abandon. Let’s ban them and we save the oceans! Think of the turtles! And it’s something easy to get rid of! No one needs a straw – everyone can drink without it! And we will all feel good, and feel that we’ve done our bit to save the turtles.

Let’s look at this argument one piece at a time. First, going back to the Ocean Conservatory’s report (which was pretty representative of a number of surveys I found), the number one discarded item was cigarettes. If we want to ban something – why not ban cigarettes? Their only positive use is the pleasure of the individual smoking them, while causing countless cancers for both the smokers and those forced to breathe it in as second hand smoke – and they are polluting our beaches. Number 7 on the list was straws and stirrers – so banning straws doesn’t even target any of the main culprits.

Next the turtles – I’m sure we are all use to this report, and the extremely upsetting image of the turtle with the 4 inch straw wedged in his nose. It really makes the issue real for us all. But how common are these images, where the damage is caused by straws? Take a look at the photo in the NOAA article of the remains from dead albatrosses. The most common item is definitely bottle tops – number 5 on the list. There are many actions that we could take to preserve our wildlife, but banning straws, and straws alone, isn’t enough.

It seems like straws have been chosen because it seems so easy to do – because who needs a straw? I’ve seen all kinds of campaigns, including telling people to “stop sucking”, meaning both ways – literally stop sucking on a straw to drink because figuratively you suck because you’re damaging the planet. Quite simply, I suck. That’s how I drink because my mobility issues mean that I can’t reliably lift a cup to my lips. And I’m definitely not alone. There are many, many, people like me. For a myriad of disability related reasons, there are a large number of people who drink through a straw. At home, I drink through what I call an adult sippy cup – it’s a water bottle with a straw built into it. It goes everywhere with me, but when I eat out, or if I’ve forgotten it, I’d like to be able to look like everyone else and not put my damn sippy cup on the table!

Picture of my water bottle with its built-in straw

The next part of the argument runs “you can carry XYZ type of straw, because we all have to do our bit to save the planet.” There’s all kind of suggestions for metal and silicone straws, paper, you name it. Now disabled people are forced to defend why each type doesn’t work for them – metal straws don’t work for people who have spasms and seizures, paper goes too soggy too fast and isn’t robust enough, anything reusable needs really careful cleaning and many of us rely on carers who already have lots to do in the time we have them available, and so on, and so on. Ultimately, it’s another piece of kit to remember to take out to access an experience the world of non-disabled people because the experience is built around their needs and not ours.

Then it hit me. We have a solution that currently fits most of the needs of disabled people. It’s robust enough that it survives a fair amount of chomping but soft enough that it doesn’t damage the teeth and the roof of your mouth. It’s disposable so we don’t need to clean it. It’s readily available so we don’t have to take more stuff with us and can just have a spontaneous drink while we are out, and look like everyone else. What is this wondrous solution? It’s the plastic straw!!! Just let us use the damn straws we currently have – or design something that fits both the environmental viewpoint, works for us and fits the price point of restaurants and fast food joints.

But is this really that important – is the ban going to happen? Well, the City of Vancouver already voted to make it a reality by June 2019. They say that they are going to “continue working with” disability advocacy groups. Great. I wonder what solution they’re going to come up with? The plastic straw?

As the straw debacle has surfaced more and more in the last year, I have generally opted for a common sense solution – make straws available on demand. However, yesterday I read this article about banning laptops in classes. It makes a number of points about the experience of disabled people that I hadn’t brought forward into the straw debate. Sure, it says, disabled people can ask for permission to use laptops, but in doing so, they have to be the ones to go the extra mile by completing the required process, and they then stand out from their classmates who want to know why they “deserve” this preferential treatment and so on. And, once again, the evidence did not support that banning laptops for everyone made students any more attentive. (Putting my educator hat on, it has been proven over and over again that the single biggest influence on the quality of learning any classroom is the quality of the teacher.) Hence, when you ban something and make disabled people apply for special dispensation, it becomes something else that disabled people have to demonstrate their need for, and in doing so, makes them stand out as the Other. The deviance from the norm. The ones with the problem.

There are already too many times that disabled people have to defend their need for an alteration – think about those with invisible disabilities who repeatedly have to defend their “blue badge” to park in designated accessible parking spots. Now, disabled people are going to be left not being able to drink while they are out or, at best, have to request a straw, and at some point have to justify their need for a straw to some know-it-all.

Disabled people are generally not found on beaches for hours, soaking in the sun, drinking multiple Big Gulps and littering. We don’t typically litter that much anywhere – because if we had that much manual dexterity we wouldn’t need the straws in the first place! Banning straws before finding a suitable product to replace them with isolates us and makes us have to defend ourselves unnecessarily. And for what benefit? To reduce the 7th most common item on the list of beach pollution?

I hear you ask what I would do, to appease those who want the ban but still have straws for those who need them? Have options available. Allow people to opt out of straws if they want to. If you have to make it so we have to opt in, then don’t wait until the table has been served and then the disabled person has to request one! When you take the drink order, ask how many people want a straw! (And, find some way to bring it other than in the bare hand of the server that has just cleaned tables and plates, as happened to me.) Find new materials to make straws from that meet our needs but biodegrade in a reasonable time frame. Look at new measures for landfills and other waste dumps – these plastic eating bacteria and so on. And, most of all, find a solution before you ban. Put the solution in place, then the ban becomes unnecessary.

Oh, and try banning number 1 to 6 on the list before you get to number 7?

MS Awareness at the BC Legislature

On Monday May 7th, I was part of a team from the MS Society that went to the BC Legislature to spread the word on our priorities to the MLAs. At the same time, my mum was visiting from England! It was a trip of learning experiences touched with serendipity, and hopefully, some great outcomes for people with MS and for all disabled people.

The fun started with dinner, on Sunday night. No, this isn’t a foodie blog post, this is still a political post! As we were sat outside, a car pulled up at the traffic lights and two men started shouting “Michelle! Michelle!””Who is that?” asks my mum. “That would be my MLAs”, I reply, as they’re both waving at me from the car. Our walk back to the hotel took us back to the Legislature, we stopped to admire the fountain. The lights had been switched on and turned to red. Lovely!

BC Legislature at night, lit up in white, with fountain in foreground lit up in red

The day began with photos on the steps of the Legislature. While it was mostly smiles and back slapping, it was also good to meet up with my MLAs again – Norm Letnick and Steve Thomson. Why do I say I have 2 MLAs, you might ask? In fact, I have one, Norm Letnick, for Kelowna-Lake Country. In reality, there are 3 ridings that cover the Central Okanagan, so it makes sense for them to work as a team. Since I have known them, they have run their constituency surgeries together, and if there are issues that affect the whole region, one of them takes it on, and moves forward with it. In my time advocating, the third MLA was Christy Clark, who was also Premier, so her representative came to the meetings. Now she has resigned, Ben Stewart was re-elected as MLA in February. I had yet to meet him – but stay tuned, readers!

Michelle, Norm Letnick, MLA, and Steve Thomson, MLAMembers of the MS Society group on the steps of the Legislature with Tania being interviewed by the pressLarge number of MLAs with members of the MS Society team on the steps of the Legislature

After the MLAs did some work in the House, and I went back to the hotel for a sleep, we had lunch, where a number of volunteers sat at tables with MLAs – mostly NDP MLAs, including Adrian Dix, Minister of Health, and John Horgan, Premier. John Horgan met up with Lynn Hunter, an MS volunteer, who had been an NDP MP (yes, federal) – and he had worked for her then! My mum and I sat with my MLAs – Norm and Steve! While we discussed to the MS Society priorities and listened to a presentation on them (which they should know really, really, well, the number of times I’ve told them!) my mum asked them some questions about whether the MLAs of each party “got on” with each other – and when we realized that no-one was rushing to say hi to them or sit with us, I was very thankful that they had come to the lunch to support me. To be clear, this has nothing to do with politics – I’m very clear to them that my personal politics lie far to the left of the NDP! – but it has everything to do with people working together to do the right thing. And I believe that Norm and Steve work hard for the people of the Central Okanagan – as much as we might disagree! As the lunch was breaking up I got to meet the third MLA in the Central Okanagan team – Ben Stewart. It was good to be able to have that first meeting, as we are sure to meet back on home turf, and I’m bound to be asking for support for something.

One of the stories in the presentation was me and the lack of accessible washrooms at the ultrasound clinic – when I had to transfer onto the toilet where the whole waiting room and reception area could see. That was the story picked in the morning by the press too. Super. My washroom habits are now infamous.

As Minister of Health, Adrian Dix proclaimed May as MS Awareness Month in the province of BC. As part of his speech he covered his vision for care – one where supposed concerns for safety (that have little to do with safety) are no longer the drivers for our care system; where we build a system that caters to all the needs of disabled people, not just those most basic functions of care. I’m paraphrasing – but I don’t think I’ve over-exaggerated what I heard. Talking about another priority, a BC Disabilities Act, we heard that once the federal act is written, there is a commitment for a BC act to come next. That was big news for me, and very important – hopefully it will leave us without gaps in our coverage, legislatively, as disabled people.

After lunch we went into the gallery of the house for Question Period. What a performance that is! The bowing to the chair (even when no-one is sat there). The standing up and sitting down. The language. The announcements of the different groups in attendance went on for around half an hour! On our way out, I asked the staff how they ever got anything done, if all they did was announce who was watching them – but I was told that today’s was quite different! Norm (notice the familiarity…) introduced me – and my mum. I knew it was happening, and he had some notes, but at the last minute he decided to “wing it”, he told me later. I have to say me brought a tear to my eye! You can watch him speak by clicking here.

After another quick sleep I went back to the Legislature for a meeting with Tania, the president of the BCY division of the MS Society, and Charles, MS Society BCY Government Relations, and two BC Liberal critics – sort of shadow ministers. They were the Opposition Critics for Health and for Seniors. Joan Isaacs is the Seniors Care critic, while the Health critic is – wait for it – Norm Letnick! The meeting was in Norm’s office, and while we were waiting to start, Norm pointed out someone in the hallway we should meet – Rick Hansen!

Michelle with Rick HansenMichelle, Tania, Charles and Rick Hansen

After some photos and some chat with the Man in Motion, we got down to business. I know from past experience that Norm likes facts and solutions. In his previous career, Norm had been an associate professor at Okanagan College in business, and I think I know how his students would have felt if they put forward a less than complete proposal! We went backwards and forwards, and drew out from our priorities two questions that Norm was going to present as part of the Estimates committee meeting. We left, promising to send him more background information.

This is the part where the trip was sprinkled with a bit of pixie dust or was just plain serendipity. Estimates are the process in the Westminster parliamentary system where the government sets forward detailed estimates of its budget – how much the proposals are going to cost. These go forward to the Committees of Supply, where questions are asked of the Minister and senior ministry officials. All of it is on the record – it’s all recorded in Hansard – so the words, and any commitments, are there in print, going forward. If we had planned our day to be later in the month, we would have missed this opportunity. Similarly, without having built up a relationship with Norm previously, and with him being aware of the care issues, I don’t think we would have been able to get such detail into our discussion, and we would have made much more general points.

For the rest of the week, I became a real political junkie and followed the discussions on Hansard! Norm covered our issues in detail, which, in turn allowed the Minister of Health to get his plans into the record too. We all seem to be in agreement. That needs to transfer into action going forward. Talk is cheap, so they say. If you’re interested in seeing where all this advocacy turned into questions in committee, follow these links:

https://www.leg.bc.ca/documents-data/debate-transcripts/41st-parliament/3rd-session/20180509pm-CommitteeA-Blues

https://www.leg.bc.ca/documents-data/debate-transcripts/41st-parliament/3rd-session/20180510am-CommitteeA-Blues

https://www.leg.bc.ca/documents-data/debate-transcripts/41st-parliament/3rd-session/20180510pm-CommitteeA-Blues

It was a great day – great to see our legislature in action, great to meet so many people and have the MS Society priorities get such recognition. I’m extremely grateful to everyone we met with on the day, and the genuine way they engaged with our issues. Of course, my most grateful thanks go to Steve and particularly Norm for being such great examples of constituency representatives and for continuing to support those who particularly need their voices to be heard. But don’t think they all get off lightly! Now words need to become actions!

Legislature and the fountain

Wondering where I’ve been and what I’ve been doing?

I’ve outgrown this blog, it seems! Over the last couple of months I’ve developed a website, that you can find here, where I can put more than I can put in this blog.

On it, you’ll find posts, that are all “followable”, and updates on other things I’m doing – including artwork. If you follow this blog, please go to the website and follow it as well, so that you can see anything I add there. The posts are much more friendly to me, as I can post little and often, rather than writing a huge blog post, which can be a challenge!

Winter certainly isn’t a friendly time for wheelchair users. Trying to find wheelchair ramps onto the sidewalk can be a challenge!

Wheelchair tire tracks leading from the ramp to the sidewalk

We have had a lot of snow at home. It shrinks my world, and I can’t help shovel the snow – no snow plough on the front on my chair! The snow is making some amazing shapes, though. Deefer, one of our dogs, enjoying the snowShapes in the snow on the lift into the hot tubOur garden covered in snowIan wearing a woollen beard to keep his face warm in the snow

Consultation for the new Human Rights Commission

In November I was invited to take part in the consultations for the new Human Rights Commission, with Parliamentary Secretary Ravi Kahlon. Below is my written submission that framed our face-to-face discussion.

Michelle and Ravi Kahlon-0FD8-4987-A537-ABF54AEDAD94

Dear Parliamentary Secretary Kahlon

As a disabled woman and a long-time advocate for disability rights, I welcome the reinstatement of the BC Human Rights Commission, as an opportunity for the Government of BC to play a proactive role in improving the lives of disabled people, and to reverse the disturbing trend of the invisibility of disability rights.

I live in the Central Okanagan and advocate for the rights of disabled people. As someone who had a successful leadership career before my disablement, I recognize the privilege I had, and I see that this same privilege is not present in the lives of disabled people. In particular, there is a lack of value placed on the lived experience of disabled people. I feel that it is my duty to speak out, to advocate for those disabled people whose voices are silenced, and to demand substantive change for the 17% of BC citizens who are disabled.

I am an elected board member of Disability Alliance BC; a regional board member and government relations committee member of the MS Society of Canada, BC and Yukon division; and the founder of a fledging disability rights group, the Central Okanagan Disability Coalition (CODC). CODC aims to inform disabled people and their allies of the options available to them locally, provincially and nationally, to improve their lives, and educate others about the lived experience of disabled people.

Historical Awareness of Disability Rights
While minority rights have seen advances, beginning with the Civil Rights era in the US, historically, those advocating for disability rights have not had the same success. Indeed, I would suggest that while the rights of women and people of ethnic minorities have increasing public visibility, there is not the same level of awareness of disability rights. In 1995 Hillary Clinton declared at the UN Fourth World Congress on Women, in Beijing, that “Human Rights are women’s rights, and women’s rights are Human Rights.”1 That speech happened 13 years before the UN Convention on the Rights of People with Disabilities was even ratified, and no-one has stood up in front of any such august body and declared “Human Rights are Disability rights”, and vice versa.

It is not through lack of trying on behalf of the disability community, that this gap in awareness has persisted. Indeed, Canada came very close to excluding mental and physical disability from the non-discrimination clause, section 15(1), of the Canadian Charter of Rights and Freedoms. It is only through the persistence of the Council for Canadians with Disabilities, (under its first name, the Coalition of Provincial Organizations of the Handicapped (COPOH)) that these aspects were included.

Fifteen years later, in 1997, the case of Eldridge vs British Columbia came before the Supreme Court of Canada; it concerned the refusal of the BC government to provide sign language interpretation to deaf patients. In the summation, the court made the following strong statement about the historical disadvantages faced by disabled people. Note that, twenty years later, in 2017, the same issues of marginalization and exclusion persist:

It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions…
This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw…[People with disabilities]… have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of able-bodied norms…2

Five years after this Supreme Court judgment against this province, the BC government dissolved the BC Human Rights Commission, making British Columbia the only province in Canada without a Human Rights Commission. This action removed the ability of the government to be proactive and to educate the public on human rights, leaving only limited and punitive measures through the BC Human Rights Tribunal. Figures from the Annual Reports3 of the Tribunal show that disability accounts for around 45% of the grounds for complaint to the tribunal each year, and in 2016-17 “[d]isability represented 55% of the grounds of discrimination at issue in final decisions”4. This means that disability-related complaints are more likely to make it through the arduous process to a final Tribunal decision than all other grounds for discrimination. Many issues do not even make it this far, as the process is seen as unapproachable and unaffordable by most, with lawyers of fees of $15,000 a day quoted7 for hearings which could last for 3 to 5 days. All this, and even if the decision is in favour of the disabled complainant, the outcome does not result in substantive change for disabled people in BC. Being proactive is costs less and more effective.
The BC Human Rights Commission is needed now more than ever for the disabled citizens of this province. In Spring 2018, the federal government aims to table legislation specifically targetting disabled Canadians, aimed at tackling issues of accessibility and inclusion. Not only does similar legislation not exist in BC, lagging behind 3 other provinces, but there are no plans to put it in place. This will leave disabled British Columbians dealing with an inconsistent patchwork of legislation.

What happens when the government fails to act as a role model?
I believe that the role of government is to set the bar high and, from this, expectations rise everywhere. Dissolving the Human Rights Commission in 2002 removed the bar on expectations for human rights in BC, allowing various levels of governance to renege on their responsibilities to minority groups. An example from my community: The City of Kelowna had an accessibility committee that was able to provide feedback to Council on issues relating to disabled people. Five years ago, it too was dissolved. Now, there is no official way for disabled people in Kelowna to give feedback on the issues they face in the community and, critically, no group for the city to approach that has expertise in the lived experience of disabled people. It leads to a scattershot approach to disability issues, such that every department in City Hall deals with disability issues differently, with varying level of effectiveness.

Recently, the City of Kelowna launched an initiative called Community for All Ages, to capitalize on grants available from the Union of Municipalities of BC, with a focus on issues relating to seniors, children and disabled people. To do this, a steering committee of key stakeholders was formed. This committee had no disabled people as members, only people who worked with disabled people. One of their first decisions was to decide not to use the term “disability” or “disabled”, but instead, to refer to disabled people as “people with diverse abilities”; a divisive, patronising euphemism replacing the phrase accepted provincially, nationally, and internationally – persons with disabilities. When I challenged both this decision and the lack of disabled people on the committee, I pointed out that when the City wants to ask about growing apples, it asks people who grow apples. When it wants to ask about disability, it asks non-disabled people to speak on behalf of disabled people. It is extremely important that the BC Human Rights Commission both models and promotes inclusive design, by including people with disabilities as full members of the commission, thereby demonstrating the value of the lived experience of disabled people.

Without a proactive body to educate the public, it becomes difficult to create substantive change, as each instance of discrimination is viewed as an individual case, which does not help other disabled people facing similar discrimination. I will share one very personal (!) example; just one of many examples faced by myself and disabled people every day. Once a year I have to have a renal ultrasound. This requires you to drink a lot of water an hour before the scan, have the scan of the full bladder, go to a washroom to empty it, and have a scan of the empty bladder. I went to my local ultrasound facility and when it came time to go to the washroom, I found that the only one of sufficient size (displaying the blue accessibility logo) did not allow me to shut the door with my wheelchair inside the room, as the door had been hinged to swing into the room and not outwards, as indicated in the BC government building code Building Access Handbook5. I was forced to transfer onto the toilet with the door open, in full view of the reception desk and the waiting room, and for my husband to take the chair into the hallway and bring it back when I called him. I simply cannot imagine this kind of inappropriate exposure happening to non-disabled people, particularly in a medical facility where using the washroom is part of the procedure.

I made a complaint to the medical practice, and a year later, on returning for the same scan, I found that the only difference was the blue accessibility badge had been removed from the washroom door. When I questioned this, I was told that the medical practice had been advised by their general contractor that having an accessible washroom was not a requirement for them. Further, I was told I should use the public washroom in the main concourse of the building if I did not want to transfer in full view of everyone. Again, imagine non-disabled people being told they have to go elsewhere, when there is a washroom right in the medical facility. I responded with a letter quoting the relevant section of BC Building Access Handbook including my intention to take my complaint forward to the BC Human Rights Tribunal. That threat was hollow, though, because, like most disabled people, I do not have the resources to carry out such a complaint individually. Apparently, the threat was sufficient as the hinges were swapped to the outside of the door and the washroom is now wheelchair accessible. However, the steps I had to take should not be necessary to achieve accessibility. It altered one door in one facility. It does not set precedent, it does not educate the public and it does not make substantive change for the disabled citizens of BC. A BC Human Rights Commission has the potential to make these changes possible.

Disabled people in BC are discriminated against in many more major ways beyond this single instance of a lack of accessibility. They struggle to find employment, as employers find ways to cover up or disguise discrimination, leading to unemployment or underemployment for disabled people. They struggle to find suitable housing at an affordable cost, and are discriminated against for being disability welfare recipients, which, again, in a competitive rental market, is difficult to prove. Applications for programs like BC Disability Assistance (PWD) and CPP-D are complex and rely on medical evaluation processes that are difficult to navigate, especially for those with episodic and invisible illnesses. British Columbians with disabilities need a robust body that is prepared to take on these major issues of discrimination and disadvantage, and lead the province in a proactive manner to make substantive change for all disabled people.

The time to make changes is now
It is time to raise the profile of disability rights, and declare that human rights are disability rights and disability rights are human rights. There is much work to be done. Read the reports on the launch of this consultation process from the Globe and Mail 6 , CBC7, and the Vancouver Sun8 and pay special attention to the lack of any mention of disability rights in any of these media accounts. Various minority groups are identified as victims of discrimination. Some are mentioned by the government representatives involved and others by those interviewed for the articles. Nowhere is ableism mentioned and there are no quotes from members of the disability community, leading readers to believe that none were interviewed. Hence, disabled people, the minority group that represents the bulk of complaints to the current tribunal process and has been historically marginalized, did not make it into the media coverage of the launch of this consultation. The message continues to be that disabled people are invisible and their issues are not important enough to be included in the commission.

What do we need the Human Rights Commission to do?
While there is a myriad of actions that the Human Rights Commission can do, I believe that action in the following areas would serve as the building blocks of the new BC Human Rights Commission:

– Place a high value on lived experience in the appointments made to the BC Human Rights Commission
Disabled people in BC need a Disability Advocate with lived experience to champion their rights, and to lead this work on the basis of human centred design. The disability rights movement phrase “nothing about us, without us” has led the disability movement for decades, and disabled people cannot be given a back seat – or no seat at all – in the latest version of the BC Human Rights Commission.

– Educate the public well
Local government, businesses, organizations and the public need clear materials9 that can guide them in their dealings with disabled people. These groups need accurate information to read, accurate depictions of disabled people to view, workshops to take part in, all based on solid contemporary approaches. Groups and individuals need to know that they can contact the new BC Human Rights Commission to receive robust, knowledgeable answers to their questions in a timely manner.

– Use an intersectional approach
Disabled people do not exist in isolation of their multiple identities, including race, gender identification and culture, for example. Hence disabled women, in particular, face discrimination most keenly, through historical abuses, including the effects of poverty, violence and insecure employment. Within the BC Human Rights Commission, no minority group must operate in isolation, as it is at the intersection of these groups that we find the most vulnerable people, those most in need of support and advocacy.

As a disabled woman and an advocate, regionally and provincially, I see the discrimination faced by disabled people on a daily basis. The new BC Human Rights Commission offers great promise to begin to redress the historical disadvantages faced by disabled people and will only meet this promise with the direct involvement of disabled people. Thank you for considering my submission and I would be very pleased to continue to be involved in this important work as the project continues.

Michelle Hewitt
Disability Advocate

 

1 https://www.nytimes.com/politics/first-draft/2015/09/05/20-years-later-hillary-clintons-beijing-speech-on-women-resonates/
2 Eldridge v. British Columbia (A.G.), [1995], B.C.J. No. 1168.
3 http://www.bchrt.bc.ca/tribunal/annual-reports.htm
4 http://www.bchrt.bc.ca/shareddocs/annual_reports/2016-2017.pdf
5 https://www2.gov.bc.ca/assets/gov/farming-natural-resources-and-industry/construction-industry/building-codes-and-standards/guides/2014_building_access_handbook.pdf
6 https://www.theglobeandmail.com/news/british-columbia/bc-human-rights-commission-to-be-restored-after-15-year-absence/article35888695/
7 http://www.cbc.ca/news/canada/british-columbia/b-c-ndp-to-reinstate-human-rights-commission-after-15-years-1.4236078
8 http://vancouversun.com/news/local-news/b-c-government-brings-back-human-rights-commission-after-15-years
9 An example from Ontario – http://www.ohrc.on.ca/sites/default/files/Policy%20on%20ableism%20and%20discrimination%20based%20on%20disability_accessible_2016.pdf