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. 

New Year, New Me, blah blah blah

I’ve never been one for New Year’s resolutions. New Year seems to come at the wrong time of the year for it. It’s cold outside and there’s all that Christmas chocolate staring at you. It just seems that if you’re going to make a change, you should give yourself some chance for success!
It’s not that I’m against making changes. When I was in my late teens I decided to give up eating chocolate and crisps (chips for North Americans…) for Lent. I’m not religious, it just seemed that it was a manageable amount of time to aim for and I had a certain amount of guilt for all the pancakes I’d enjoyed without the payback afterwards. You might be surprised to know that I was very successful at it! How? I replaced chocolate with Caramac and crisps with Wotsits and Monster Munch. Sort of did it by the than the spirit

11 years ago I decided it would be good for me to lose weight and get fit. I did a good job of it – lost 70lbs, went to Curves 5 days a week, for a couple of years. Skinny(ish) and fit. Then I got ms and put the weight back on to the pound of what it was before, and decided to spend my life sitting down. Go figure.

In 2016 I decided to never to share or comment on anything that originated from the person who says his middle name is the main ingredient for guacamole. He says so much utter garbage that I decided that even sharing his most innocuous posts was encouraging him. I’m sure my one little click means nothing to him, but you’ve got to start somewhere. And it was easy, and now it’s become habit, which has to be the measure of a successful resolution – you no longer think about it, it just becomes part of what you do. 

Some people are really good at the resolution thing, because they take a completely different approach to it. Dani is excellent at it – she takes a theme for the year, but before she does it, she critically examines what that’s gong to mean for her, and what it will actually look like. Read about it here  – I think her theme of Enough for this year is going to be a challenge that’s she definitely up for.

Every year I facetiously say that my resolutions are that I’m going to eat more chocolate, watch more football and hug my dogs more, because that’s achievable, and yes, that’s what I’m going to do this year too. And the basis of those resolutions is quality of life – that’s what’s important – to enhance the quality of life of yourself and others. And, of course, if you enhance your quality of life, it doesn’t come at the expense of others.

I like to think of my “resolutions” in terms of different projects, which start whenever it’s the right time, no matter whether it is a new year or not. Last year’s massive project was Winnie and everything that brought. This year that project continues, of course, with us looking at more things to do, more places to go. There’s a couple of other projects on the go, and a few new ones on their way too, but it’s too early to talk about them. 

Whether you choose resolutions or not, keep them or break them, I hope 2017 treats you well.

Deefer - many bones to chew means quality of life!

Quality of life for Deefer

Share your opinion on the proposed Accessibility Act – or if you don’t have an opinion – share mine!

Hopefully Canadians know that the government is currently conducting consultation on proposed disability legislation. I’ve mentioned it before, and it’s certainly a hot topic. The Americans have the ADA – Americans with Disabilities Act – which is 25 years old, but Canadians have nothing.
Right now, the consultation is ongoing. If you live in Victoria or Vancouver – or indeed other large cities across Canada – you might have been able to take part in a face to face meeting. For the rest of us – and those in the big cities that weren’t able to attend the meetings – consultation is being done by an online survey. 

Accessibility Legislation Survey
I hope that all Canadians will take part in the consultation one way or another. If you do, here’s a few things to think about.

The first thing is – what is this Act to be called? As you will have read in my previous posts, words have meanings in the disability world, just as they do anywhere else. The Americans plumped for Americans with Disabilities, but that doesn’t really say anything about the intent behind the Act. The Canadian act is initially being called an accessibility act. That’s such a limiting title. It seems to imply physical things – ramps, signs, Braille. Things that help you get into building. But once you get into the building, what then? Are the services delivered in a way that make sense to you? Are the opportunities presented in an inclusive way? Disabled people need things to not only be accessible physically but to be inclusive, so it would be better if this was called the Accessibility and Inclusion Act.

Second – just what is it to cover? This is, after all, a federal act. As you can hear, I’m originally English. I have to say, the federal/provincial system still befuddles me, in its scope and bureaucracy. I had a conversation with an MP before the 2015 election and I was talking about the need for this act. For him, it all went back to the constitution and every example I brought up of how disabled people’s lives would be changed, he had a reason why that was not a federal issue. I find that sort of compartmentalized attitude infuriating! For me, the first job of the federal government is to raise the bar, not to nitpick the responsibility over each individual nut and bolt. Their job is to set the standard high so that everyone else follows, and to follow it up with actions. One example would be a National Building Code. How great it would be to have a common set of standards for accessibility across the country – and for the federal government to follow that by ensuring every federal building at least met the code, and demonstrated innovative ways to go beyond that minimum.

However, that leads me on to the next point. It’s got to have teeth. There’s no point in having these standards held high with no enforcement here on the ground. We have to reward excellence, share examples of good practice so that no-one is reinventing the wheel, and when organizations fail to meet the standards, there must be legislation to enforce compliance. 

There’s one point that comes first, last and everywhere in between. And that is – Nothing About Us, Without Us. What does that mean? Here’s a local example. In my recent discussions with my City about the needs of disabled people, I pointed out this discrepancy in the way it does business. The City has an agriculture committee, and on it are representatives of various sectors of the industry – fruit growers, the wineries, crops and so on. The City doesn’t have an accessibility committee, but any committee working on short term projects that involves disabled people has representatives of the health authority and that sort of thing, but no disabled people have a place at the table. Hence, if they want to know about growing apples, they ask people that grow apples. If they want to know about disability issues, they ask people who know stuff about disability, maybe, but have no lived experience. The Act must be developed with disabled people playing key roles. Disabled people must be the major players in all parts of the Act’s ongoing implementation. It seems so obvious, but clearly it isn’t.

I urge you to take part in the consultations. Do the survey. Talk to friends, colleagues, family about the issues. It’s time to make a difference. 


Representing Disabled People on TV – I’m Speechless¬†

The representation of disability on tv often leaves much to the imagination. Disabled people are often figures of pity. Their disability is centre stage, not them as individuals. In Scorpion, for example, the main protagonist’s sister had MS. She seemed to be okay – then she was in hospital and she died! Imagine if you’d just been diagnosed – gulp! Okay, you know it’s a tv show, but surely they must have checked it out? Surely they wouldn’t get it that wrong?!?
Last night I was watching Blue Bloods. Two of the cops were on crowd control while a tv cop show was being filmed. They were talking to the on-set advisor to complain about some of the procedures they had seen, and they were told “it’s not a documentary”. It made me think. No – it’s not a documentary. More people watch it than a documentary, so perhaps there is more responsibility to get it right?

That brings me to Speechless, the new sitcom on ABC. It revolves around the DiMeo family, and JJ, the eldest son, a teenager, has cerebral palsy. He’s in a wheelchair and can’t speak. He uses an AAC device – a word and letter board with a light pointer. And… wait for it… 3 episodes in and I think it’s doing a great job!

Sure there are issues. JJ communicates at a really rapid pace – he barely points at words and they’re spelled out for the person reading it. In reality, using any AAC device is a very slow process, but I’m willing to cut them some slack – it’s a 30 minute comedy show.

I want to concentrate on the issues raised in last week’s episode – its third episode:

Letting go: JJ has negotiated a whole day away from his mum, with his care aide. Her concern for his wellbeing shows a common concern for carers – how do you let go, knowing all the times that you have had to step in and help? I have a friend who has just been through that with her teenage son going out with his friends on his own for the first time. I experience that with Ian regularly – I tell him I can do something independently that on other days I have failed to do. I tell him to channel his inner Elsa and “Let It GO”! Obviously, the concern is real, and the costs of failure can be high, but, as disabled people, we need to have the independence to try.

Inspiration porn: When JJ and his carer, a black man called Kenneth, line up to buy a hot dog, everyone allows them to go first, saying that they are an inspiration. At first, this is great fun for them to see how far they can push it, ending up at a Dodger’s baseball game, but after awhile, Kenneth pulls away from JJ to enjoy the events for himself, and JJ feels the frustration of being taken for granted. Sure, I’ve happily gone to the front of the line – lining up for the cruise ship in LA, in temperatures of over 30C would have made it a medical emergency if we hadn’t been taken to the front – but being pawed by strangers in public who want to tell you that you’re an inspiration, or hearing “Good for you!” when you tell people of something you’ve done that wouldn’t get the same mention for a non-disabled person is tiring and can be demeaning. If you’re still uncertain of what I mean, watch Stella Young tell you all about it.

Caregiver guilt: JJ’s family go out to do something they can’t do with him – they go paint balling! At the end of the session, the daughter shouts “this is the best day ever!” and they all stop having fun as they realize it’s only because JJ isn’t with them. Again, my response returns to Elsa “Let It Goooooo!” It’s healthy! I need time apart from Ian just as much as he needs time away from me! Luckily, I now have my CSIL funding, so I have respite built in to my week. I find it interesting that it’s always thought of as respite for the carer – but we, the disabled people, need respite from the carer too!

Losing your voice: JJ’s carer left behind his AAC device – his word board. He told Kenneth that he had taken away his voice. While this was a very physical representation of it, disabled people lose their voice in many ways, from JJ’s example, to people finishing our sentences for us, to the structures in society that prefer that non-disabled people speak for disabled people. I have been dealing with this with the City of Kelowna and its Community For All Ages project which has no disabled people on the main committees. We must continue to demand that there is “nothing about us, without us.”

Ian and I laugh at so many of the situations in Speechless, as they are so similar to those we have been in, as a disabled person and a carer. And there is so much about our life that we laugh at, in ways that others might find irreverent or not politically correct. I asked a disabled friend, do you think non-disabled people find Speechless as funny as we do? Perhaps they do, but for different reasons. I’m going to keep watching, and I’m going to know that the jokes, for once, are for us.