Thud, Thud, Thud

Thud, thud, thud.

That’s the sound of years of disability rights activists banging their head against the wall as they work tirelessly, trying to achieve substantive change for disabled people.

Compared to some of the people I know, I’m a newbie at this ‘game’, and I’m still shocked, disappointed and angry. It feels like disabled people are so far behind in trying to achieve equity that they’re running a marathon while everyone else is doing the 100 metres.

Here’s my latest example, all around booking hotel rooms.

First, I need a hotel room for an MS Society conference. I’m travelling with an assistant so I need a room with two beds. None of the accessible rooms at the hotel where there conference is, have two beds. If a non-disabled person books a hotel room, they have a full range of choices of room type. Disabled people usually have one choice of room, and a choice that probably meets no-one’s needs by trying to find some sort of average level of accessibility.

So what are my choices? I can have a regular room with two beds, but I definitely won’t be able to use the bath or the shower, and I probably don’t fit in the bathroom. And getting around in the room will be very difficult – presuming I fit through the door! So now we try to see if there is a connecting room. Because it’s the MS Society, and a conference, there’s a good chance that a connecting room may be available for free, but if I was booking this as an individual? No chance.

I also have to travel again, two weeks later, for a DABC board meeting, again needing 2 beds in a room, in a different part of Kelowna. If a non-disabled person wants to book a hotel room, I’m guessing that you go on a website – like Expedia, or hotels.ca, or something – to see what’s the best rate you can get? For me, it’s phone calls and emails to see what the rooms are like, to see what accessible features the rooms actually have. Using websites like Expedia don’t work, because often the accessible rooms aren’t on there, or the description of the features isn’t detailed enough. The cost of the room is the final link in the chain. No special deals for us!

So what’s the solution? For me, there’s two things happening right now that need to come into play, as this is bigger than individuals trying to make changes happen one hotel chain at a time.  Hotels are provincially regulated, so while the new Federal Accessibility and Inclusion Legislation – or whatever it ends up being called – will help to raise the expectations on standards, it won’t help with this. The two things that need to happen are a proactive BC Human Rights Commission and robust BC Disabilities Act.

The BC Human Rights Commission was disbanded in 2002, but is being brought back by the new NDP government. Consultations are currently underway, and it is hoped that it will be running in 2018. However, it must be proactive and it must demonstrate by its action that it believes in the lived experience of disabled people.

Equally, BC needs a disability law. Once the federal law is in place, we will be left with a patchwork of coverage, based on what falls under federal or provincial legislation. It’s too confusing and leaves too many loopholes. This isn’t part of the NDP mandate, even though they have said they are interested in the past. Pressure is now needed to make it happen.

In the meantime, I’ll just keep emailing around, to try to find the magical combination of availability and accessibility.

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When service doesn’t serve

Some people know what service means, others clearly don’t.

A little while ago we had problems with our wheelchair accessible van. It has a lower floor and it will kneel even further. That system is run on an airbag, and a compressor. On a trip out for groceries, it would not stop filling up with air! It kept filling up, letting some off, and filling up again – and the whole thing sounds like it’s farting!!!

We have a wonderful mechanic, called Perry, whose business name is the Air Doctor – perfect person for it to go to. While it was with Perry, it stopped starting – the computer system froze him out – so off to Bannister, the GMC dealership, she went.

Things started to get a little crunchy, timewise, as I was going on my first trip away without Ian. I had to go to Vancouver to see my neurologist and for a board meeting. With the effects of the chemo, Ian just wasn’t up to a trip like that, with all the comings and goings. For the first time, I was being taken by Brooke, one of my employees.

After a few days we were told by Bannister it was starting! Great! We could just leave it with the air bags full, and sort out the compressor/levelling when we we got back.

When Ian collected the vehicle, the technician told him that there was a “pink wire” that seemed to be causing the problem, it didn’t seemed to be attached to anything, so he had removed it and the van started. Hmmmmm. We were unconvinced. It sounded like coincidence.

We then started to discover a few things about the van. The key fob didn’t work. The doors didn’t lock when you start to drive. The button to open the door to deploy the ramp didn’t work – the only way to open the door is by strong, brute force. The interior lights don’t come on when the doors open.

And, of course, it was the holiday weekend.

I sent an email to Bannister, asking for the service manager’s email address, and got nothing in reply. I wrote to the general manager, and he wrote back saying he was on holiday, but he had put it in the hands of the service manager. In the email, I explain that we are vulnerable – advanced MS! Stage 4 cancer with bi-weekly chemo! – but that I’m not expecting sympathy, just explaining the repercussions of a vehicle that has all these extra faults to us.

By this time, I am travelling to Vancouver with Brooke – and we find out that cruise control doesn’t work. Luckily we had added me to Ian’s BCAA because we spent the whole trip wondering what else was going to happen to it – what else was powered by this damn pink wire.

Finally today I spoke to the service manager. Basically, as far as she was concerned, they did a fine job, and all the rest of it – not her problem. Every single fault was because we had a vehicle with after-market work. Of course, all wheelchair accessible vehicles have after-market work – that’s the point! They don’t come that way to the showroom. As far as she was concerned, they were asked to get the vehicle started, it now starts – all of the other faults that cropped up, which could be because they removed this damn pink wire – not her problem. The vehicle starts – that’s all they were asked to do. That we are vulnerable people, in need of a vehicle that works? Not her problem.

It really makes me question the term service, in what they do, and in her job title. There was never going to be a meeting in the middle in our conversation; our needs were never going to be considered. The service manager had already made her mind up on the outcome before we started to talk. As the conversation moved along, it felt like we were talking two different languages. “We see lots of vehicles – we can’t be expected to know what works and what doesn’t work” is what I was told. I had the same conversation with some teachers, as a principal, when a parent was not happy with the treatment their child was getting. “I have 30 children in the class – I can’t be expected to deal with this” – and my response was always “but they have one child – they’re not concerned with the other 29 – that’s what you’re paid to do.” Equally, I’m not concerned about all the other cars and experiences that Bannister has had. I’m only concerned about my van – and my van came back to me worse than it went to them.

My van now leaves me more vulnerable. We are not your average customer – that van leaves Ian at risk of injury if he has to open the door, and, therefore, leaves me housebound or using taxis.

So yes, the van starts, gee whizz. But we certainly didn’t receive any service. We spent money on the work they did – but we paid for ineffective work! I understand that investigations take time, and are difficult, but the conclusion they reached was only partially successful – they swapped one problem for a whole load of others, and now we have to pay to fix these additional problems.

We look for people who are going to be part of Team Hewitt. When something goes wrong – who has got our back. We have friends, doctors, all kinds of health care people, my care employees, everyone at C Lovers – the list goes on! We’re not after charity. We’re not after things for free. We just need to have people that have got our back – that know that the job needs doing right. It’s clear that Bannister are not wanting to be part of that team – or anyone’s team, it would seem.

Where from here? The van is going back to Perry. He has a number of strategies. I have faith that he will get the job done.

TransLink – What do you do think I should do when the elevator isn’t working?!?

Last week we had to go to Vancouver. Ian has been diagnosed with cancer, and as part of this, we had to go to the BC Cancer Agency for him to have a PET scan, and then return to Kelowna the next day for appointments here for the rest of the week. To say we were feeling stressed is an understatement.

We were meant to travel in Winnie. We got as far as Merritt on the Friday, and Winnie said "this seems like a lovely place – I'll stay here!"

We had to quickly rearrange our plans, get one of Deefer and Lacey's favourite aunties to look after them, and find a wheelchair accessible hotel room for Monday night. The PET scan was at 3:30pm, so we had time to drive down on that day, so we would just stay on that night. Finding a wheelchair accessible room at late notice in the summer was tough, but we finally found one in Surrey just along 104 Ave to Surrey Central. This meant that Ian didn't have to drive in to Vancouver, as we could take a bus and the SkyTrain to the appointment.

Getting there went really smoothly. We got instructions from the concierge at the hotel on which buses to take to and from Surrey Central. Each time we have been on a bus, the drivers have been very helpful. For those who don't know, Surrey Central is a fairly big hub. We got on the Expo Line – I really don't understand it. The trains are older, and there's these labels on the doors with the wheelchair symbol. I got on, and all there is are places marked for people with disabilities and seniors to sit. I'm really not sure where I meant to park, so I ended up backed up to a door – which means that the backpack and pockets on the rear of my chair are exposed every time the doors open. I'm sure it's not meant to be like that?!?

Anyway, we got there, Ian had the scan, and we headed back, two very weary people. We got off at Surrey Central, and there was an "Out of Order" sign on the elevator. No instructions on what to do, no-one from Translink there to help, just a sign. We were kind of stunned. Tired, at the end of a long day, following a long weekend, and stressed to the max.

Luckily, there was another passenger in a wheelchair. She was a local, and she told us we had to get on the next train and get off at the next stop – which is the end of the line! She said that it happens all the time. While it was comforting that she knew what to do, it seems awful that she's used to it. And what if the elevator is out at the next stop too?!? The end of the line, literally and figuratively.

We got the train, got off at the next stop, and both of us got on our phones to work out which bus would get us to the hotel. Luckily, it was a pleasant summer evening, with actual sunshine rather than the usual Vancouver "sunshine". So yes, we survived, but we really didn't need it.

Presumably there's a customer service standard and presumably there's a procedure – but we didn't see either. Of course I have written to TransLink and I look forward to their reply. It's just another time when someone didn't think it through, and disabled people are left in a vulnerable situation.

Qualtrough: The culture must change

On Saturday June 17th, Carla Qualtrough, the Minister of Sport and People with Disabilities, spoke at the AGM of Disability Alliance BC. It was an excellent talk that left me feeling that our minister “gets it”. The focus of her talk was her work in consulting and developing the federal act for disabled people, the Accessibility and Inclusion Act, or whatever it will end up being called. Canada is playing catch up in this – the Americans with Disability Act is over 25 years old.

Minister Qualtrough opened her remarks with this statistic – half of the human rights claims in Canada are for discrimination due to disability. And of these human rights disability claims, 60% are for discrimination relating to employment. If ever there was an indicator that legislation is overdue in Canada, this is it.

As part of the consultations leading up to this Act, Minister Qualtrough and Prime Minister Trudeau met with a panel of disabled youth. She noticed that these youth approach inclusion and accessibility in a different way to those older than them. There is a fundamental shift in language, where inclusion is an expectation, and they have a sense of entitlement, in a good way. That there is an expectation of full citizenship, of full participation in all aspects of Canadian life.

Throughout her speech, Minister Qualtrough came back to this central theme: Accessibility is bigger than one law, culture change just as important as legal change. She repeatedly commented that “we need to get in front of these issues”, meaning that we need to stop being a culture where disabled people are met with barriers and have to ask for them to be removed, but we should be a culture where barriers are not devised in the first place. That every act the government does is first viewed through the lens of accessibility and inclusion. This is a theme close to my heart. I have an expectation that that should be already happening, particularly in local government, but I have learnt repeatedly that it is not the case – and, in 2017, I find that shocking.

When specific examples arose in her speech, they were examples of exclusion that were familiar to every disabled person. For example, paperwork – and the onerous requirements for disabled people to keep filing paperwork proving a disability that is not going to go away – if you’ve had one leg amputated, it’s not going to grow back. Why do you have to keep filing paperwork every 3 years to prove it?!? The size of the task, to unravel the minutia of every department and their requirements for disabled people is huge, but a task that must happen, and I have no doubt that Minister Qualtrough will be pushing her colleagues to follow through.

We are continually surrounded by examples of exclusion for disabled people, particularly those that limit employment. In a discussion on access to documents for blind people and those with low vision, the Minister mentioned that while there is more awareness of the accessibility standards for websites for the general public to use, the same standards do not apply to internal government websites and software, and they often do not work with screen readers. Hence, while there was a consideration that a disabled person may be a consumer of a government service, there is no thought that this person could equally be an employee. This was recently highlighted in the news, and the story can be read here. This is common, however. The recent BC Liberal platform for the 2017 provincial election talked of making government buildings that offer customer service accessible by 2020, but not considering the needs of employees, in all manner of government buildings and positions, who need the same accessibility standards. 

These behaviours are so ingrained that the culture shift must happen concurrently with legislation, for the act to be understood. When Minister Qualtrough was asked how she thought this switch could happen, it felt like everyone in the room realised the size of the task and the lack of a magic bullet. Indeed, cracking that nut is not only the key to this, but also the most challenging part. While the main thrust must come from all levels of government, backed by grassroots organizations, I have hope that some change is already underway. Recently I went into a new business and asked them if they were wheelchair accessible – “of course we are – doesn’t everywhere have to be?” was the reply. I answered with a kind of wry smile – if only they knew. 

The social model of disability was weaved through all parts of Minister Qualtrough’s speech. She quite rightly identified a switch in language that needs to happen in North America – we need to move away from the language of accommodation to the language of adaptation. You accommodate the individual, but you adapt the environment. This is the bedrock of the social model of disability – that the issue sits with society and not the individual. The Labour Party in the UK put out a separate part of their manifesto for the recent general election that just dealt with issues faced by disabled people, entitled “Nothing About You, With You“. Again, the language is that of the social model of disability. Hearing our government and political parties elsewhere accept and promote this model is a major step forward in moving towards the culture change that we need to see. 

I believe that the role of our government is to set the bar high in their expectations of themselves, of their governing, and expect (hope?) that the rest of the country will follow their lead. We were told that the first draft of new legislation could be ready later this year or early 2018. For me, this draft will show just how serious the government is about facing up to this task and creating a Canada that lives up to the expectations of the youth that Minister Qualtrough met. 

Limiting Movement

What limits my movement? My wheelchair or society?
When I became disabled, I approached the expectations of what I could do and where I could go on my previously able self. As a disabled person, I was full of ableist notions – “I can’t expect them to alter that just because I’m in a wheelchair.” I think we all know that I’ve mostly left that behind, but it’s tough. It’s tough to keep asking for things, tough to keep coming up with the solutions.

You may have read my previous posts on washrooms, and how accessibility to places to pee has been a longstanding battleground for most marginalized groups. There’s also the issue of limiting someone’s movement generally, making places that are inaccessible to some people in society, and society being okay with that.

I read this article in the New York Times today, and it really struck a chord with me. There are definitely kitchen and alleyways that I have seen that I would have preferred not to have travelled through. And it definitely makes you feel ‘welcome’ when they have to clear garbage, recycling and broken chairs out of the way for you to get in. The entrance of the restaurant is made into a welcoming place for most people, but not if you can’t wheel in through the front door. And once you get inside, what if you find a restaurant of booths or those tall chairs and tables? Yep. Everything is at nose level for me. 

I’m also struck by the term segregation. As a white person, I wouldn’t feel comfortable using that term. Being a white person means I speak from a position of white privilege. But as a black woman, Doucette makes the case strongly, and yes, I agree. It’s segregation based on limiting the movement of people; limiting their access to places that others are allowed to go to freely.

If I arrive at a restaurant and the way in for me isn’t clear, what does it say? It says more than they don’t want my business. It says I’m not welcome there. It says that people like me, who look like me, move like me, are not welcome in their space. There is a presumption, as mentioned in the article, that I shouldn’t be out alone, that I need a carer who can go inside and ask if they are accessible. What if I was on my own? What if – shock horror – two people in wheelchairs were rolling by together and just felt like dropping in for lunch?!? Why do I have to plan in advance? My movement is limited by society and not by my wheelchair.

In the recent BC Liberal platform, they made a commitment that they would “ensure all government owned or leased customer service buildings are fully accessible by 2020 (exceptions for heritage properties)”. Sounds good, eh? Not so fast. The emphasis on customer service buildings assumes that disabled people are recipients of services, but not employees. It should be all of their buildings – and it should have happened already. And excluding heritage properties? Let’s take a moment to think about that. (And yes, English Michelle is rolling her eyes at BC “heritage properties”! It feels like they were built yesterday!)

The old Michelle, the ableist Michelle would have said “well of course not heritage buildings. We don’t want to spoil things.” Stop and think about it. Once again, a portion of the population are being excluded. We are not able to have that same experience, ever. And so many building code regulations have been grandfathered so that buildings don’t have to make it accessible. My local McDonalds used that excuse for the washroom – a place you go to to eat and drink doesn’t want me to go to the washroom! McDonalds! And they had just done a major renovation, knocking down walls to put in a fireplace! In McDonalds!

In 2017 there are solutions, creative solutions, that mean there can be equity in accessibility. I was really struck by this solution to a Visitor’s Centre at Dry Falls, Washington State, so much so that I made Ian video me having a ride! I think they told me the building was built in the 50s. This solution certainly didn’t alter the “character” of the place any more than installing stairs and a hand railing does. 

I have seen many solutions – look at all of these solutions in genuinely old buildings! Sesame Access looks so creative and I would love to go on a lift that pops out from stairs like that! Open Sesame! I do hope it is signed clearly so that people in wheelchairs know it is there, and they don’t have to ask someone to ask for them.

It is genuinely possible to include everyone. The first thing that needs to change isn’t the building, it’s people’s attitudes. Creating access for me is just as much as a right as building stairs for you.

Don’t make me come after you with this look on my face – you know I will!

In my wheelchair, on a sidewalk, unable to fit between a railing from a store and the back of an overhanging pick-up truck

A basic human right 

Why is it always about bathrooms? The fact that we all have to empty our bowel and our bladder, and that it’s kind of embarrassing to talk about it, seems to mean that it’s okay to ignore the rights of some people.
Regular readers will know that I have had my own problems with accessing bathrooms. My local MacDonalds doesn’t think it needs to have an accessible washroom. It’s okay to renovate the place every other year, but the money is never found to reconfigure the bathroom. Then there’s the ultrasound clinic, that thinks it’s okay for me to either transfer on to the toilet with the door open for all to see or use the public washroom outside the clinic, even when having a pee is part of the procedure. And of course, flying. Just too complicated to get me to the washroom on any flight I’ve been on – the one time I had to go, the air stewardesses had to stand with their backs to me to make a wall so no-one could see past – because we couldn’t find a way to get me in and shut the door – and that was after a protracted conversation about how to use the onboard aisle chair and forcing them to break rules to take me to the closest washroom (5 rows away) rather than the one at the back of the plane!

And it’s obviously not just me. In Britain there has been an outcry after a Paralympian was forced to wet herself on a train, due to not only the lack of an accessible washroom. The train company’s solution was that she get off at the next station and then catch a later train – but even that was impossible as there was no-one at the next station to help her off the train. You can read the full story here

Today there is a story from Toronto about a woman with spina bifida who was refused the use of a restaurant washroom because it was downstairs, and they might be sued if she fell and hurt herself. Read the full story here and imagine your increasing humiliation if that was you being talked about in front of a restaurant full of people – and all the time you want to pee. 

The part that interests me the most in the story is the comment by Sheila Cavanagh of York University, that access to bathrooms has long been a battle ground for activists. Think of the stories from segregation and ‘Whites Only’ bathrooms. Think now to the transgender bans on bathrooms. As Cavanagh says “washrooms have historically been places where people try to exclude those who do not conform with what prevails as mainstream at the time … disability rights may be the next to be hashed out on this long-standing battle ground.”

I think the time is long over due for disability rights to come to the foreground of this battle. We all have to pee – why is it so damn hard to get access? 

I question the owners of every establishment I see that does not have an accessible washroom. I ask you to do the same.

Travelling While Disabled

I just got back from a really quick trip to Vancouver for a meeting. We flew there and back, with all the usual challenges that it brings. An added one greeted me on collecting the chair when I got off the plane:

Error message on the console of my power wheelchair

Error message on my console

Yep – an error message on my wheelchair! It still drives, but who knows for how long. As we flew with my good friends at WestJet, I know it will all be taken care of.

Today, a friend sent me this video, of Zach’s quest for the rainbow bagel. I’m sure any of us in wheelchairs have had many similar experiences.