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.

A Client Centred Approach to Care

We have an election in BC on May 9th for the provincial government. Both Disability Alliance BC and the MS Society are working on their priorities for the upcoming campaign. It’s important that we think about the people behind the priorities, the effect that these priorities have on their lives. Over the coming months I’ll be doing a series of posts on the priorities we have decided on, and the stories of the people behind them.

One of the big priorities for both organizations is our approach to care. There are many stories more critical than mine, but it lays the foundation. The process that the system is built on.

Applying for assistance with care is an intrusive process at its best, because it deals with your bodily functions, those most personal aspects of your life. Applying for care and continuing to receive care within these programs needs to recognize the person and their right to privacy.

I get my care through CSIL – Choices in Support for Independent Living. On the face of it, it’s a great program, because it gives you a great deal of independence, but there are other aspects that need attention.

Starting to apply puts you into a strange world. You are asked to time all aspects of your life that need care – transferring on and off the toilet, showering, dressing, eating. You name it, you time it. As you can imagine, it’s tedious and not very accurate. After you have completed your timings, you learn that there are already a whole load of rules in place! 

Meals – if there are two of you, you can only claim for the time it takes to do anything different that is just for the person who needs care. So my husband prepares all of our meals, but we can only claim for the time it takes for him to chop up my food for me!

Compression socks – it took you 4 minutes? Sorry! Our list says it should take 2 minutes – that’s all you get!

Laundry – only the time it takes to load and unload the machine, not the time it is in there

And on and on the list goes on. Perhaps you get a community care nurse who knows a few tricks of the trade and helps you to complete it all. Perhaps you get one that makes you feel like you’re over-exaggerating your needs. Who you get is really important – they are the person that is representing you!

Your needs are presented to a panel, a committee, someone who makes the decisions about how much care you get. My first response was “Great! When and where? Do they know I can only do mornings?” Then here comes the crunch. You’re not allowed at the meeting. Wait, what? You’re talking about me, about my needs, and I’m not there? What about Nothing About Me, Without ME?!? A client centred approach would begin with me being there, and then move on to other options if I didn’t feel capable of representing myself.

Once you get through this, if you are successful, you are given a number of hours and the money associated with it. But this process does not go away. You are re-evaluated periodically and have to do the timings again. That makes sense, right? I have a progressive disease, I’m going to get worse, we need to make sure that I’m receiving enough care? No. Behind the re-evaluation is the possibility your timings are wrong, that you’re taking more than the allowed time to transfer. The threat that your hours may be reduced.  And on top of that, the timings could be done by the person conducting the review – a complete stranger timing your most personal acts.

CSIL means you are the employer. You find your staff, you hire them and fire them, train them, pay them, do taxes, WCB. A great deal of independence. And every single person on CSIL is doing this independently. One person on it told me that they completed 14 ROEs in 6 months as staff came and went. Wouldn’t it make sense if there was a collective of people approved for CSIL? A database of staff in your area that are already employed by someone else on CSIL and might be available for some extra hours for you? A network of people just like you that you could work together with? Independent doesn’t have to mean alone. Wouldn’t interdependent be a better approach?

Certainly, CSIL is the right approach to care for me. The home care model is not something that I would consider. But CSIL needs some work. It needs to put the client at the centre of the model.

The power of the individual 

We often think that as an individual our actions are not enough to make a difference. That’s not always the case, and given the challenges with the new occupant of the White House, it’s more important than ever for us to act to make a difference.

If you a disabled, maintaining your independence can be a challenge. One of the main aspects of being independent is being to travel to places. For many disabled people, the only option they have to travel is by public transport. If you live in a major city that should be relatively easy, but it’s not always the case.

In 2012, Doug Paulley, a wheelchair user, was trying to get home by bus. The space on the bus that was meant to be for wheelchairs had a pushchair in it, with a child that was asleep. The mother refused to wake the child and move the pushchair. The details are here.

This certainly isn’t the first time this had happened, but Mr Paulley is a disability activist. He took his case all the way to the Supreme Court and in January won a ruling that drivers must try to get the other passenger to move. Excellent!
Not so fast. Just a few days after the ruling, this happened. Once again, the person in the wheelchair, Kirsty Shepherd, was refused entry to the bus because of a pushchair being in the wheelchair spot. The mother offered to move it, but the driver, who was clearly having a bad day, said no and ‘terminated’ the bus! And look at the reactions of passengers – rather than siding with the disabled person, there were shouts for her to get off so that they could all get home.

The power of the individual. The mother with the sleeping child. The bus driver that wouldn’t challenge her. The bus driver who was having a bad day. All individuals whose actions had a major impact on the disabled people trying to use the bus, a negative one.

Doug Paulley, taking the case all the way to the Supreme Court. Kirsty Shepherd who came forward with her story. The mother that was prepared to move her child in the pushchair. All individuals  whose actions had a positive impact for disabled people. 

What would have happened if the people on Ms Shepherd’s bus had stuck up for her, instead of shouting at her to get off? Could you be the person who stands up to be the positive change? 

Somehow, I think we are going to need a lot of people to stand up for the positive change in the next few years.

The long reach of a publication

I know a lot of you academic types. You write things, it gets published. Maybe it gets read, maybe it doesn’t. What if I told you that a document about categories for an economic report would be used 25 years later throughout the world, and continue the use of outmoded and derogatory naming for disabled people?

Last week Ian got invited to a volunteer event with the City of Kelowna. It was to launch a volunteer initiative for Canada150 to log the volunteer hours of Canadians throughout this year and to inspire them to volunteer more. When he told me about it, I thought it might be a way to promote the two organizations I’m a board member with – the MS Society and Disability Alliance BC. I went to the website for the event, and that’s where things started to come unstuck.

I logged in and needed to add my organizations. MS Society – no problem. Disability Alliance BC? Missing. There was a process to add  an organization, so I started to do that. First step – what category is the organization? The only one that remotely ‘fit’ was “Services for the Handicapped”.

Handicapped?!? In 2017?!?

I sent an email to the organization behind the initiative, Volinspire. A speedy response offered to change it to “Services for Special Needs and Diverse Abilities” – a step backwards to a couple of euphemisms as far as I’m concerned. An email discussion ensued where I gave my case for people/persons with disabilities. I find it bizarre to have to explain we have a Minister for Persons with Disabilities, Canada is a signatory to the Convention on the Rights of Persons with Disabilities, the main advocacy organization in Canada is called the Council of Canadians with Disabilities, but, for some reason, people here in Kelowna think that “diverse abilities” sounds nicer! 

You may think it’s strange that I am arguing to be called disabled, that that isn’t something you would expect. Here’s how to think about it. What is it that disables me? Is it being in a wheelchair, or is it that I live in a society that isn’t designed with my needs in mind? I’m not sure if I’ve shared my favourite video on this subject with you, but if not, here it is:

Get it? Good.

One of the emails from Volinspire said that the form I was completing on the website was filled with data that they had received from Canada150, which came from a StatsCanada website, which in turn came from the UN, from something called ICNPO – the International Classification of Non-Profit Organizations. A few more turns with Mr Google and I discovered that this classification had been written by Johns Hopkins Centre for Civil Society Studies, in conjunction with the UN. How strange that the UN would be promoting the use of the term handicapped?!? And the ICNPO was being used everywhere – the term handicapped had been embedded into countless documents worldwide.

An email was sent to Johns Hopkins – and a really speedy reply came.

This is where the long reach of research and documents comes in.

This classification system was written 25 years ago. Its purpose is to help statisticians to compare work in nonprofit and for-profit organizations and when it was written, it drew heavily on an even older classification system. I guess we are lucky that it said handicapped and nothing worse! The people who wrote it had no idea that it would be used, 25 years later, for the public to add their organization to a volunteer initiative. Here’s what Johns Hopkins had to say

I should mention that ICNPO is in no way intended to dictate or endorse specific terminology to be used by nonprofits themselves in either their names or the descriptions of their programs/missions. It is, rather, intended to allow statistical agencies across many different countries and cultures to have a common brand definition of the fields of activity in which nonprofits operate. 

Hmmm. But once it was out there, there was no way to check how it was being used.

They also told me that they are in the final stages of presenting the revisions to it to the UN, and the term that will be used is  – guess what – yup – persons with disabilities. It won’t be available until the end of the year – and how will it filter through the myriad of uses the old language has been used for in the last 25 years. I’m sure we will be discovering this use of this old report for many years to come.

I forwarded it to Volinspire. Their response? They’re going to have a discussion and let me know what they decide.