Category Archives: activism

We Are Not Your Props

Last week, the Internet exploded over the case of Jody McIntyre, a wheelchair user who was pulled out of his chair during a demonstration in Britain in front of a shocked crowd. I saw the Tweets rolling out live as the incident happened, with people demanding to know why the event wasn’t being covered on television; as usual, the coverage slanted towards focusing on ‘dangerous’ and ‘unruly’ protesters, as well as framing the people involved as ‘middle class’ with the goal of writing off the seriousness of the events and erasing the participation of people from the lower class who were up in arms as well.

From the corner of my eye, I spotted one of the policemen from the earlier incident. He recognised me immediately. Officer KF936 came charging towards me. Tipping the wheelchair to the side, he pushed me onto the concrete, before grabbing my arms and dragging me across the road. (McIntyre writes about his experiences)

The case caught attention as a result of being caught on video and went viral; within days, McIntyre had been interviewed by the BBC and mocked in The Daily Mail. This particular incident of police brutality started getting significant traction in discussions about the protests.

Much of the narrative surrounding this incident was righteous outrage. Seeing footage of a 20 year old man with cerebral palsy who uses a wheelchair for mobility being hauled out of it and being left to sprawl in the street sparked rage, and my Twitter feed exploded. It’s wrong, most people seemed to agree, for police to abuse ‘the disabled‘ when they are exercising their rights to peaceful protest. People also emphasised McIntyre’s ‘weakness‘ and ‘helplessness’ although I think he pretty amply demonstrated in his BBC interview that he is far from helpless:

Interviewer: And why then, do you think– Are you saying the police picked on your twice. Why do you think they did?

JM: I have no idea. I mean, to make one suggestion, I think in the second incident at least, I think there’s a clear element of trying to provoke protesters into violence. Personally, I see myself as equal to anyone else, but I do understand that I could be perceived as more vulnerable, so I think there was an element of trying to provoke violence from others.

Numerous incidents of police brutality were documented during the London protests, but this particular case got a lion’s share of the attention because it involved a disabled man. Another protester experienced a head injury so severe that it required surgery.

Which is a curious contrast from the way the left seems to regard other wheelchair users exercising their free speech and assembly rights. Every time there’s a significant conservative demonstration here in the United States, I see people using mobility devices being singled out for special mockery by the left. The liberal ableism starts flying when it comes to people with disabilities doing things the left doesn’t like and we are reminded that we are considered pawns when we express views the left does not like, and heroes when we’re expressing views the left does like.

It’s Tiny Tim season, so of course this case hit a number of sweet spots, as it were. McIntyre was an excellent choice ofcause celebre for nondisabled people angry about the police response to the protests because he was a symbol. An object. Dare I say it? A prop. McIntyre was ‘the disabled.’ It’s generally agreed that being mean to ‘the disabled’ is one of the worst things a person can do and unlike those pesky nondisabled protestors who were abused by police, there is, of course, no rational way he could have posed a threat to police, making his abuse at their hands ‘unjustifiable.’

I don’t know how else to say this because I feel like I have been saying it for years, and no one is listening:

We are not props. We are not symbols. We are not rhetorical devices. We are human beings. We have free will and bodily autonomy.

Every protester in London had a right to not be abused by police. Not just the disabled protester. And every person has a right to express views, no matter what they are, no matter who agrees with them, regardless of disability status. Patting us on the head when we fit with your agenda and then telling us we’re ‘clueless’ when we don’t is patronising, it is dehumanising, and it is wrong.

Jody McIntyre attended that protest in full awareness that police violence had been ongoing at the student protests and he took a calculated risk, knowing it was a possibility, just like every other protester. He’s not a hero or a rallying point because he was dragged out of his chair and hit by police while disabled: He’s a person who experienced police brutality. He pointed this out in his interview:

I would say that it’s very important not to see this as an isolated incident. This is the police’s role at demonstrations. To incite and provoke violence. They’ve done it in the past and they’re continuing to do it now. I am not the real victim here. The real victims are the students, like Alfie Meadows, who is in hospital within an inch of his life after a policeman struck him on the head with a truncheon and he needed emergency brain surgery. Now imagine if it was Prince Charles, or Camilla, or a police officer who had been within an inch of their life.

He attended that protest because he had something to say:

“[The police] are out of control,” he said. “I have just as much right as everyone else to protest. My 16-year-old brother now believes he will be unable to go to university because of the higher fees involved.” (‘Footage shows protester dragged from wheelchair‘)

Every time our disabilities are used to leverage pity and other emotions, it’s a reminder that people think of us as consumed and defined by our disabilities. If McIntyre hadn’t been in a chair, he would have gone down with scores of other nameless protesters who were abused by police. If his abuse hadn’t been caught on video, a handful of enraged Tweets would have been the sum total of the matter. Instead, people are trying to leverage him to make political points.

This case is rare; usually when we are used as pawns to advance agendas, we are not allowed to speak for ourselves. McIntyre has been interviewed and given a voice and an opportunity to push back on some of the narratives surrounding him, breaking out of the prop mold people want to shove him in. Most of us don’t have that chance.

I’ll leave you with this:

As a result of events on the 9th December I will be pursuing legal action against the police. But I do not because I see myself as a victim. The real victims are the likes of Alfie Meadows who was hospitalised as a result of his injuries. We need justice not only in my case but also in Alfie’s case and anyone else who’s suffered in this struggle.

While this condemned government continues to promote values of inequality and attempts to widen the gap between rich and poor, I will speak up for those who do not have a voice. (‘Who’s apathetic now?‘)

“There’s a suggestion that you were rolling towards the police in your wheelchair”: BBC Interviews Jody McIntyre About His Assault By London Metropolitan Police Officers

I would like you to take a moment to imagine the look on my face when I realised that the BBC interviewer in the following clip (transcript below) actually asked Jody McIntyre, a 20 year old man who uses a wheelchair and has cerebral palsy, whether or not the fact that Jody is a “revolutionary” is reason enough for the police to have assaulted him twice during the London riots last week. The following interview is full of similar gems, including a rather pointed “appear to show” what the actual footage shows.

I want to salute Joey for his calm yet firm responses throughout the interview.

BBC Jody McIntyre interview

[This is an interview conducted by an unidentified male BBC reporter Ben Brown with Jody McIntyre, a man with Cerebral Palsy who was pulled by police officers from his wheelchair during the recent protests against tuition fee increases in the UK. There is repeated footage of McIntyre being pulled from his chair, which was being pushed by his brother. The footage shows multiple London police officers pulling McIntyre from his chair and dragging him across the pavement and away from his brother and his chair while outraged bystanders shout in horror at what they’re seeing. The clip shown is a cleaned up and enhanced version of the clip that went up on YouTube – the original is full of a lot of cursing and screaming from bystanders which has been edited out by the BBC.]

Interviewer: Pictures of a disabled man being dragged from his wheelchair by police officers during the protests in London over the tuition fees have emerged online. Now these pictures appear to show Jody McIntyre, 20 year old fiscal activist and blogger who suffers from cerebral palsy being pulled out of his wheelchair and dragged across the road to the pavement. While the Metropolitan Police have released this statement on that incident, saying

In connection with the incident shown on YouTube of of a tuition fees protestor in a wheelchair the Metropolitan Police confirm that the man involved, Jody McIntyre, has not launched an official complaint. The issue has been referred by the Metropolitan Police to the Directorate of Professional Standards and the Met Police say they will contact Jody McIntyre directly.

That is the statement from the police that we’ve received, and we can speak to Jody McIntyre now whose in our Westminster Studio.

Interviewer: Good evening to you.

Jody (JM): Good Evening.

Interviewer: Could you just explain what happened to you?

JM: Well, during the demonstration I was attacked by and pulled out of my wheelchair by the police on two occasions. The footage you have just shown is of a second incident. One of the police men who had dragged me down the road in the first incident obviously recognized me, came running over, pushed me out of my wheelchair on to the road, and then dragged me across the road.

Interviewer: The police say you haven’t made any kind of complaint, so why not?

JM: I haven’t made a complaint yet but I’m in contact with a lawyer and I will be doing so.

Interviewer: It’s been a few days since this happened. Why haven’t you complained before?

JM: Because I wanted to consider my options before taking that step.

Interviewer: There’s a suggestion that you were rolling towards the police in your wheelchair. Is that true?

JM: I think justifying a police officer pulling a disabled person out of a wheelchair and dragging them across a concrete road is quite ridiculous and I’m surprised that you’ve just tried to do so.

Interview: So that’s not true, you were not wheeling yourself towards the police.

JM: Well I can’t physically use my wheelchair myself. My brother was pushing me. I think it’s quite obvious from the footage that I was 100% not a threat to anyone.

Interviewer: In the Observer newspaper you were described as a cyber radical and you were quoted as saying you want to build a revolutionary movement and that can only happen through direct action on the streets. Do you classify yourself as a revolutionary? [Anna: I think this is the article he’s referring to]

JM: I don’t classifying myself as anything but I think we all have a right to fight against what the government are trying to do. They’re trying to tier education system whereby only the rich will be able to afford it. That is something that I think we should all be fighting against.

Interviewer: Now the police have said that they have referred this incident to the Directorate of Professional Standards… what’s your reaction to that?

JM: I don’t have a reaction to that but I will be making a complaint in the near future. I would say that it’s very important not to see this as an isolated incident. This is the police’s role at demonstrations. To incite and provoke violence. They’ve done it in the past and they’re continuing to do it now. I am not the real victim here. The real victims are the students, like Alfie Meadows, who is in hospital within an inch of his life after a policeman struck him on the head with a truncheon and he needed emergency brain surgery. Now imagine if it was Prince Charles, or Camilla, or a police officer who had been within an inch of their life.

Interviewer: But I have to say, I was in Parliament Square covering that demonstration and I saw protesters throwing lumps of rock at the police, throwing missiles, various missiles, at the police. Were you throwing anything at all at the police that day?

JM: I wasn’t throwing anything at the police during that day or during any [unclear] But what is clear is that the media are trying to distract the public from the real issue, which is the cuts that the government are making.

Interviewer: Were you harmed in any way in that incident with the police?

JM: Not in that … incident, in the incident that’s being shown. There was also another incident around 45 minutes earlier when a police officer struck me with a baton and yes that did cause some injury.

Interviewer: And why then, do you think– Are you saying the police picked on your twice. Why do you think they did?

JM: I have no idea. I mean, to make one suggestion, I think in the second incident at least, I think there’s a clear element of trying to provoke protesters into violence. Personally, I see myself as equal to anyone else, but I do understand that I could be perceived as more vulnerable, so I think there was an element of trying to provoke violence from others.

Interviewer: Did you shout anything provocative or throw anything that would have induced the police to do that to you?

JM: Do you really think a person with Cerebral Palsy in a wheelchair can pose a threat to a police officer who is armed with weapons?

Interviewer: But you do say that you’re a revolutionary.

JM: That’s a word, it’s not a physical action that I’ve taken against the police officers, a word that you’re quoting from a website. I’m asking you: do you think I could have in any way posed a physical threat from the seat of my wheelchair to an army of police officers armed with weapons? This whole line of argument is absolutely ludicrous because you’re blaming the victims of violence for that violence. In fact, it reminds me a lot of the way the BBC report on the Palestinian conflict–

Interviewer: When are you going to make your compalint to the police?

JM: I will be making my complaint very shortly, in the near future.

Interviewer: Okay, Jody McIntyre, thanks very much for your time, thanks for talking to us this evening.

JM: Thank you.

Further Reading: Jody McIntyre’s blog, Life on Wheels

[ETA: Thanks to various people for letting me know the interviewer is Ben Brown.]

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Connections

Chally pointed out to me the other day that I was coming up on 100 posts. If scheduling goes right, this should be it. I wasn’t sure what to do with it. I noticed, but I wasn’t sure if I should mention it. She has a knack for making people feel proud of things, no matter how trivial they seem to a person, she can make it seem like you’ve won the Pulitzer on your worst day.

It’s funny, the things you learn over the course of all of those 100 posts, or at least I did. Also funny are the way we assign value to things as arbitrary as numbers. Why is this post more important than the next or my last? Why does the first death in a war mean more or less than the 1,000th? Some people have written more, and some less, and for each of us our number is irrelevant. For me, I have a thing about marking out nice round things in ordinal series. Some birthdays are a bigger deal to me I suppose, though my mother remembers all of the recent ones.

It is, instead, what we put in and take away from a moment that matters more so than the number.

I, back when I first started blogging back at my humble little blog, wanted to be part of a group blog. Not for page hits or attention, but to be part of something. To feel that sense of belonging to a group, of being with people who had a sense of purpose. So many things in my life were constantly in disarray, and I wanted… no, honestly I needed something to feel connected to.

And it took a while, but by a random happenstance I was in the right place at the right time, and fell in with a remarkable group of people who came together to channel something hurtful into something positive, because instead of allowing ourselves to be angry, we decided to focus on being a force for change. Thus, did my life take me in a direction I never saw it going, because I had just begun to grasp onto this part of me that was OK with identifying as someone who is disabled. Not only that, I had not really learned how to interact with other people who identified that way. I was shy about venturing out as any kind of public face, let alone as any kind of self-spoken authority. Who was I, I wondered, to pretend that what I had to say mattered?

But I found out that it did matter. Not because, necessarily, that anything particular I had to say matter, but that I took a brave step and spoke up. I have always felt that the shortcomings in my life — my lack of college degree or extensive career — made me less of a credible person. What I found here was that it is the way we, as a community, relate to one another. I found that here I have a voice that matters, if not to many people, perhaps to just a few, perhaps to just one, and if I am brave enough perhaps I can be the advocate for that one person. If one person feels connected to this the way I finally feel connected then I feel that it has been worth all the tears and heart that have been poured into these 100 posts over these past months.

Even more, I found that these remarkable people, these co-contributors and founding members, have become something so deeply ingrained in my life now that not a day goes by that I don’t think of every single one of them and how they have impacted my life. I think about the way that Anna taught me to look at everything I see and think about how it could be more accessible and not to feel bad about demanding that it be so, and how lauredhel reminds me that part of being a good mum is teaching more independence because it leaves me more spoons to enjoy the fun times. I am reminded of the way that K-0 uses words artfully and lovingly, and the way that Amandaw reminds me of myself sometimes with her fierceness to defend fellow PWD. I think about Chally, who is often there at the right moment with the exact right thing to say, and abbyjean, who has a knack for looking at things from a different angle and getting to the quick of it. I can’t forget annaham, who was the first person to reach out to me and help me identify with my disability and to realize it is OK to be unsure of myself and to find strength in asking for help, and I can’t forget s.e. smith whose passion holds it all together and who sees the way everything is connected.

All of these lives have become intertwined with mine, irrevocably. All of you have become a part of it, for the part you play in reading these posts, linking them, sending them around the tubes of inter. We have all made connections and many of us have touched and impacted one another’s lives in many ways. There is amazing power in that… or, there has been for me, anyway. It is what has made the FWD dashboard the first thing I look at on a day I can work and the last thing I check before bed on the same.

I just wanted you to all know that. This is what I have taken away from these 100 posts, and I hope that is what I have put into them for you. That we, as a community of people who want social change for people with disabilities, have reached out and touched across the expanse of space and time, to be slightly cliche. You have impacted me, taught me, and given me more than I deserve, but given me everything that I had been searching for. I hope that through my learning, screwing up, and trying to get it right, I have done a decent job for you all. All of you, contributor and community member alike.

Thank you.

Canadians: Tell Your MP To Vote for C-304

One of the ways I entertain myself on the bus is looking at houses and apartment complexes we pass and deciding whether or not we’d ever be able to live there. “Hmm, that looks like a ramp could be built to the front door.” “Wow, that’s a useless step that could be taken right out. Is that there for decoration?” “Damn, I hope no one in that apartment building ever breaks a leg because that’s never ever going to be accessible to people who can’t climb a flight of stairs.”

Finding housing is one of the main challenges facing people with disabilities and their families. Don and I spent months looking for an apartment building in Halifax that didn’t have “just a tiny flight of stairs”. I’ve talked to people with service animals who have repeatedly struggled with being refused housing for having a “pet”, even though such refusal is illegal. Mia Mingus, Crip Chick and their supporters have been documenting their attempts to find accessible affording housing.

On top of this, finding affordable housing when one or more members of your household have a disability can be incredibly difficult and daunting. Disability is expensive, even with Canada’s patch-work attempts at assisting with the many and varied costs. Assistive technology and its upkeep is costly. Medications are costly. Having in-home assistance is costly. “Special” foods that are necessary if one has any dietary restrictions are costly. Transportation, adapted or otherwise, is costly. These bills add up, and trying to adapt or locate accessible housing on top of it can lead to hopelessness and despair. (Certainly it did when Don and I tried to find accessible affordable housing in Halifax.)

Next Wednesday, October 20th, Canadian Members of Parliament will be voting on the Private Members Bill C-304, “An Act to ensure secure, adequate, accessible and affordable housing for Canadians”.

This Bill has been pretty much off the radar for anyone who isn’t on poverty-rights mailing lists – a search through CBC, for example, finds only two hits, one from 2009 and the other in a 2010 blog entry that mentions it in passing at the end. This isn’t particularly unusual, since Private Members Bills, especially ones supported by opposition parties, don’t really get a lot of attention because they don’t often pass.

At the same time, though, this is the problem. This bill explicitly talks about housing as a right. It explicitly talks about housing for people with disabilities. To quote:

“accessible housing” means housing that is physically adapted to the individuals who are intended to occupy it, including those who are disadvantaged by age, physical or mental disability or medical condition, and those who are victims of a natural disaster.

It is so rare to see any bill in parliament that acknowledges disability, let alone one that actually talks about housing needs. It would be great if we could make some noise, if we could make it clear to our Members of Parliament, our elected representatives, that we as Canadians care about accessible and affordable housing needs, so even if this bill doesn’t pass, the next time the topic comes up our MPs know: This is something that Canadians want addressed.

The people behind Red Tents have planned a National Day of Action in support of Bill C-304 on October 19th. Their main event is in Ottawa, but I know there are other events planned around the country: Halifax’s event is all day Saturday and Sunday, for example, and a quick internet search found events in Winnipeg and Vancouver as well.

I would also recommend contacting your Member of Parliament between now and Wednesday to let them know that you support Bill C-304. Your contact with them doesn’t have to be long – mine was only a few sentences – but let them know that you support accessible affordable housing in Canada, not only for people with disabilities, but other groups that are also included in this Bill. You can find the contact information for your Member of Parliament here, but be aware that, like all Government of Canada websites, this one may not be accessible to screen readers. Another option is to use Make Poverty History’s email form to contact your MP.

For more information:

Here is the text of the Bill, in both English and French.
Open Parliament has all the debate on the Bill in a handy searchable format.
The Council of Canadians with Disabilities has a history of the Bill.
Centre for Equality Rights in Accommodation has details as well.
Red Tent’s details on the Bill.

I Love Policy

It’s true. I am a policy wonk. I am endlessly interested in it. I read about it, think about it, talk about it and … write about it. (As in, what I’m doing right now.) And I do all of this because I think it’s immensely important. Crucially important. Vitally important.

Public policy is how the government – whether local, state, provincial, federal, or any other level – takes action on a particular issue. It covers a whole huge range of potential state actions – allocating and spending money, setting and enforcing professional guidelines and standards, creating agencies and staff, structuring tax incentives, even defining what constitutes criminal behavior. That’s an extremely big category that clearly has an enormous and unparalleled effect on the world.

Public policy not only drives state and governmental actions, it also has enormous influence on private sector actors. Tax policy can encourage specific areas of business, grants can encourage specific methods or practices, and governments both licence and regulate businesses. This combined effect on public and private actors means that to my mind, changing public policy is the quickest and most effective way to change things for a big group of people, all at once.

Policy touches almost everything we do and everything with which we come into contact. Right now, I am sitting on my bed, the mattress of which complies with regulations to prevent it going up in flames. I am wearing a shirt made in the United States by workers subject to minimum wage laws and industrial safety protections. The US shirt manufacturer is protected from competition from international producers by trade tariffs and taxes. The soda I am drinking displays nutritional information pursuant to federal regulations. The internet I am using is regulated by the Federal Communications Commission. Even the air I am breathing is affected by pollution standards and the decisions to grant or deny permits to things like coal processing plants. Even my kitty is included – she’s protected from abuse by criminal statute and, where I live, is protected from declawing. And that’s just scratching the surface of all of the policies surrounding and affecting me right this second.

There are, of course, a lot of other factors and forces that influence how people interact with the world, both as individuals and in groups. There’s huge effects from family, religious, cultural, and ethnic beliefs and traditions. Then there’s a myriad of individual differences – the things a person reads and watches and talks about and is talked to about, for example. I would argue that each of those things could also be influenced by government policy – like how the private movie ratings system created as a reaction to public regulation prevented me from seeing R movies until I was at least 16, or what books my local public library system bought and so were available for me to read. I’d also argue that individual preferences and differences are a lot less important than public policy in determining whether an area has a functioning health care system.

There are obviously a lot of difficulties with public policy. First, it’s mainly done by politicians, so political climate and general popular opinion can limit the range of what policies can achieve. For example, the United States could never have created a government-run nationalized health care system given the current makeup of our decision makers. Second, achieving specific goals through policy can be kind of complicated and difficult – if you were the government and wanted to “fix the education system,” it’s not exactly clear what specific steps would reach that outcome, even if we could agree on what a good education system would look like. Third, the differences between a policy as carefully written down and a policy as actually implemented can be vast, so a great policy may end up being too difficult or complicated or expensive or just impossible to implement, or may end up being significantly watered down.

At the end of the day, though, policy is literally life and death. Whether a mentally ill teenager gets tased or shot by a police officer depends on law enforcement policy, training, and management. Whether a PWD can afford and access the medications and equipment they require to live. Policy determines how and why and for how long and under what circumstances people are institutionalized. Whether and how they are protected from abuse and neglect from caretakers and family. Whether and when and how they have children.

So in the coming weeks, I’ll be writing about policy. Good policy, bad policy, and everything in between. Policy often doesn’t feel as sexy or gripping as a lot of the other topics we discuss here, but I’m hoping you’ll find it as interesting and important as I do.

Using iPhone Apps to Highlight Accessibility Issues

Via a story on Treehugger, I learned about an iPhone application called ‘Fill That Hole1,’ designed to allow members of the general public to draw the attention of public officials to potholes in their communities. Snap a picture, file a report, alert public officials to the fact that there are potholes that need to be fixed. This isn’t the only application providing this functionality, Jaymi Heimbuch at Treehugger noted in the article; this basic premise appears to be quite popular, actually.

Another example he provided was SeeClickFix, allowing people to report non-emergency safety issues in their communities. Both of these applications are terrific, as they encourage people to get involved in their communities while providing a really easy mechanism for doing it. You don’t have to locomote past a pothole, remember where it was, look up an official to contact, and then report it; you can do it right there and then, very quickly. I know I’m not the only one who sees problems in my community, sighs, and then doesn’t remember to contact someone at City Hall about it because I have a lot on my mind, so anything that would make it easier for me to tell people in charge about problems I identify is a good idea in my opinion!

Which got me thinking: Why not use applications like SeeClickFix to report accessibility issues in the community? I’d love an accessibility-specific application, actually, and I suspect that some of our readers may well be involved in the development of iPhone applications as well as applications for other phone platforms, and thus might be interested in such a project or might be aware of an existing application I’m not aware of and could point readers to it2.

I’m visualising an application that allows you to document accessibility issues like potholes, uneven ground, blocked accessible paths and entryways, and so forth, and submit that documentation to public officials. A neat doublewhammy would be an option to report them to the local newspaper as well. Here in Northern California, several newspapers maintain ‘hall of shame’ type features where they document community problems and publish them on the front page in a little box at the bottom to push public officials to make changes, and many of those papers are always looking for new issues to feature. I’m assuming that community papers in other regions do the same, or could be encouraged to start such a feature if it’s clear that there is community interest as well as the crowdsourcing ability to generate a steady flow of problems to feature.

Sending documentation of accessibility issues to newspapers would have a twofold impact of encouraging papers to discuss accessibility issues and raise awareness while also having the advantage of the newspaper platform for shaming public officials for chronic accessibility problems. Many members of the public aren’t aware of accessibility issues and don’t think about them, and featuring serious accessibility problems in the newspaper would force people to confront these issues, and could result in more conscientiousness about addressing accessibility problems before they start; someone planning an activity that will encroach on the sidewalk, for example, could think about potential accessibility problems it might pose and work on resolving those before starting the project.

For people who encounter personal barriers to accessibility or who notice accessibility problems, the barriers to reporting them can also be significant. You’ve got to take note of where the problem is and what’s going on, go home, look up the proper city official to contact, draft a communication, and send it, knowing full well that you might be the only person who is going to go through these steps, and thus that your complaint will be allowed to sit at the bottom of a pile forever. Having a phone application to facilitate rapid and concise reporting of accessibility issues would result in generating more reports, forcing people to actually pay attention to them and potentially leading to a quicker resolution of accessibility issues in the community.

I also love the idea of being able to use an application to crowdsource things like accessible routes, accessible restaurants, and so forth. When I was in the city with abby jean and Annaham recently, abby used her phone to look something up and I was struck by the fact that with people reporting on accessibility issues, her phone could have provided us with an accessible route to our location. Or we could have used her phone to look up an accessible restaurant, restroom, or attraction if we were dithering about what we wanted to do. In addition to saving disabled folks a lot of time, such applications would also act to encourage venues to be more accessible so they could be listed too. And individual user reports could cover different accessibility issues like loud noise, smells, flashing lights, and so forth; things that often aren’t considered ‘accessibility problems’ by the larger community, but would be great to know about before you schlep across 10 city blocks to get to a venue you can’t enter.

We’ve used the Internet to network as a community, why not use cell phone applications to make our communities more accessible?

  1. I am less than thrilled with this name, let it be said for the record.
  2. I should note for the record here that I barely ever use my cellphone and am really behind on cell phone applications, so if you’re rolling your eyes right now and thinking ‘how could s.e. not know about Some Great Accessibility App,’ well, that’s why.

Review: Stand Up for Mental Health

Last night I attended Stand Up For Mental Health Days on Campus, the first evening of the cross-Canada tour of Stand up for Mental Health.

I was trying to sort out a good way of summing up what Stand up for Mental Health (SMH) is, but I figure I’ll just use the description on the website:

David Granirer counsellor, stand-up comic and author of The Happy Neurotic: How Fear and Angst Can Lead to Happiness and Success, created and leads Stand Up For Mental Health (SMH). David teaches stand up comedy to people with mental illness as a way of building their confidence and fighting public stigma, prejudice, and discrimination.

Our shows look at the lighter side of taking meds, seeing counsellors, getting diagnosed, and surviving the mental health system. We perform at conferences, treatment centers and psych wards in partnership with numerous mental health organizations. SMH performs in Prisons, on Military Bases and University and College Campuses, at Government, Corporate and Community fundraisers and Forums, and Most Importantly, for the General Public across Canada and the US.

SMH will be on several university campuses over the next week, so I wanted to take the opportunity to review the show in case people are trying to decide if they want to go.

Go.

While some of the jokes and routines are funnier than others (my sense of humour is a lot dryer than this sort of thing does), the whole point of them is to talk about being Actually Crazy, to humanize what Actually Crazy looks like, sounds like, and behaves like. And it is, remarkably, not like in the movies.

The performance I attended opened with the CBC documentary “Cracking Up” (unsubtitled), which covered a year in the life of the program, highlighting five people who started out afraid to even say their names and ended giving a sold-our comedy performance. The documentary manages to somehow be both hilarious and harrowing, making it clear how much of the social stigma about mental health and mental illness deeply affect those of us who live with it. The people in the documentary learn that they can be funny, that they can talk about what’s happening in their lives, that they can speak about being Crazy. At the same time, though, the audience sees that this is not all just fun and games and being silly. It’s very apparent that these are people whose lives are incredibly difficult because of both the social stigma of mental illness and the actual affects of their conditions. Many of them live in very very small spaces in what are considered dangerous areas of Vancouver. One of them disappears and attempts suicide part way through the year the documentary covers. This is not a Very Special Lesson, but a pointed commentary.

The thing that Granirer and his group does in this is talk seriously about mental health issues while surrounding them with safe and easy-to-digest humour. This isn’t the first talk I’ve gone to at University that does exactly that. Jorge Cham’s talk about Procrastination and how he developed PhD comics also uses humour as the bread in a “people in grad school kill themselves and that’s something we’d like people to avoid doing” sandwich. It’s like folks in North America need to be eased carefully in to acknowledging that short-term or life-long mental health conditions exist, and the way to help is to talk about what’s going on, and what this culture of silence and stigma actually does to people.

On the surface, SMH looks like it’s going to be a fairly simple “come out and see a bunch of crazy people talk humourously about being crazy”, but there is a very serious point to it: mental health stigma kills.

I really recommend people in the Canadian cities the tour is touching down in this week take the chance to go and see the show.

If you’re interested in supporting the program but can’t make it out to a show, consider voting for them in the PepsiRefresh Challenge (Canada), as they’re hoping to mount a larger tour next year.

Pass/Fail

As I mentioned recently, I’ve just gone back to school. I was enrolling for classes over the summer and kept coming back to a course called “Mental Health Policy.” Here’s the description: ‘Examination of evolution of social policy and services for mentally ill, with emphasis on political, economic, ideological, and sociological factors that affect views of mentally ill and services they are provided.’

Sounds right up my alley, right? Half of me really wanted to take it, but the other half of me wants to stay as far away as possible. Because I don’t want to hear people talk about people with mental illness like they’re a separate species, like there’s none of them in the room. I don’t want to hear people advocating for involuntary commitment. I don’t want to listen to people talk about how hard it was on them to have a relationship with a person with a mental illness. I absolutely do not want to hear the terms “those people” or “crazies” or “lunatics.” I just don’t.

I know that in theory, the professor is supposed to take care of those kinds of things. But the more time I spend on disability issues, the more thinking and reading and discussing I do, I find myself moving more and more to the radical end of the spectrum. Reconsidering and rejecting a lot of the “for their own good” policies I’d been okay with in the past. Thinking more and more about the social model of disability and becoming more insistent on demanding movement and changes and sacrifices from TABs instead of being willing to sacrifice and go without.

And I don’t have any faith that the professor would agree with me about all of that. There’s a difference between demanding baseline sensitivity to disability issues – using people first language, recognizing and respecting autonomy, including the viewpoints and rights of PWDs in discussions – and expecting the professor to be as or more radical than me on every potential issue. The first is reasonable (or should be), the second is not. (Unless maybe I was enrolled at Radical Disability Studies University.)  But I knew that if the professor didn’t live up to that unreasonably high standard, I would feel irritated in every single class meeting. I would think about how radical or confrontational to be in my papers, my exams, my class discussion.

And then there would be the big question: do I disclose my disability status, or not? Do I talk about mental health policy without being explicit that I’m in the group of people who would be affected, or do I trust these strangers with extremely personal information about myself? Which of those could I live with? Which would make me the least uncomfortable?

So I’m passing up this learning opportunity – and potential teaching opportunity, as I’d imagine I’d run into some “teachable moments” at some point during the class. Because I just don’t want to deal with it. I just don’t have the energy.

And that, frankly, is a real shame. I’d love to do the reading and have the discussions and engage in the thinking that comes with the class. And I’m sure I have some opinions and experiences that would enrich the discussion and benefit other people in the class. But it’s just not worth it for me.

Signal Boost: Protesting at the Tory Party Conference

A (hopefully!) large group of disabled people will be protesting against the proposed benefits cuts outside the Tory Party conference tomorrow, Sunday 3rd October 2010. For details of where, times, etc, please see Disabled People Protest.

If, like me, you’re unable to go due to a lack of money and/or a lack of spoons then theUnited Front against benefits cuts has organised a “virtual protest”.

Read more at Where’s the Benefit? (And just read Where’s the Benefit? in general, because it is awesome.)