Category Archives: politics

John Stossel Wants YOU! To Be Afraid of the ADA

Not being from the US, I had this idea in my head that the Americans with Disabilities Act (ADA) must be awesome. I mean, come on! It’s been 20 years now! Ramps to every building, disability friendly policies, accessible washrooms in every hotel lobby! I get all starry-eyed just thinking about it.

People with disabilities who have actually been in the US are probably either rolling their eyes or giggling at my naivety.

In the last few weeks, I’ve read about airlines being fined for not following the ADA, despite repeated complaints from customers that they hadn’t been, continuing issues with post-secondary education, online content, and accessibility for students who are blind or otherwise vision-impaired (no mention of blind or visually impaired teachers) and students needing to sue in order to get attention to the fact that the new content delivery system was not accessible to them (again, no mention of blind or visually impaired teachers), the Attorney General of Massachusetts needing to step in to demand movie theater chains provide accessible content in all their theaters… The list goes on, while “advocates” tell people with disabilities not to sue because it upsets the non-disabled when they do.

And maybe those “advocates” have a point. Because even though one can find example after example after example of law suits – threatened or actually carried out – before businesses, universities, and even government offices will follow the ADA and “allow” people with disabilities the “rights” they’re guaranteed in the US, some folks still feel the need to produce opinion pieces claiming these lawsuits are frivolous and that the people who take them on are parasites (Content Warning: John Stossel).

Under the ADA, Olson notes, fairness does not mean treating disabled people the same as non-disabled people. Rather it means accommodating them. In other words, the law requires that people be treated unequally.

The law has also unleashed a landslide of lawsuits by “professional litigants” who file a hundred suits at a time. Disabled people visit businesses to look for violations, but instead of simply asking that a violation be corrected, they partner with lawyers who (legally) extort settlement money from the businesses.

Some disabled people have benefited from changes effected by the ADA, but the costs are rarely accounted for. If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare? Extra-wide bathroom stalls that reduce the overall number of toilets are only some of the unaccounted-for costs of the ADA. And since ADA modification requirements are triggered by renovation, the law could actually discourage businesses from making needed renovations as a way of avoiding the expense.

I feel like I’ve taken apart aspects of this argument before, mostly because it seems the arguments get repeated over and over until one wants to make a Bingo Card and be done with it. But, to save me some keystrokes: Let’s Bust Some Myths: People with disabilities just want to sue the world into compliance (there’s a transcript to the video linked there in the comments [1. Back when I wrote this I felt like I was making a very witty point by not “choosing” to be “nice” and putting the transcript up – if you wait for people to be “nice” then you wait a long time! I wouldn’t do that now because I think it’s shitty to make people sit around and wait so I can score some sort of political point.]), Needs Are Not Special and Accommodation is not “Special Treatment” (written by s.e.), Why Being Nice Isn’t Enough (which is meant to address the “just ask for accommodations!” part), “Bad Cripple” – you know, the fakers who are just scamming the incredibly generous disability system for the huge cheques they can rake in – oh, and we’ve got multiple posts just here at FWD about workplace accommodations being treated like a huge drama and a favour that doesn’t need to be granted rather than a right, people who work with actual people with disabilities assuming all people on prescription drugs are dangerous addicts, and how the opposite of disabled is not employable.

I think my favourite bit of the quote above, though, is the “If a small business has to lay off an employee to afford the added expense of accommodating the disabled, is that a good thing — especially if, say, customers in wheelchairs are rare?” I love that sentence, I want to cross stitch it on a little sampler and hang it up on my wall.

A Very Short List Of Businesses You Are Unlikely To See Wheelchair Users In:

1. Ones that don’t have a ramp to allow access to wheelchair users.

Seriously, that’s the basic criteria for shopping in this one-wheelchair-user household. We choose our restaurants, our coffee shops, our bookstores, our yarn stores, our sex toy shops, our grocery stores, our housing, our favourite tea place all on whether or not the shops themselves allow wheelchair users to enter. We don’t even go to one of the malls in the city because half the shops are too crowded to allow wheelchair user, so yes, John Stossel, if your business doesn’t accommodate wheelchair users chances are you don’t have many customers who are wheelchair users.

(Gentle reader, I cannot believe I just typed that sentence 20 years after the ADA passed into law.)

Honestly, that John Stossel is paid actual money to write opinion pieces that amount to “cripples are just sue-happy freaks, the ADA is why the Exxon oil spill happened, and service animals like snakes are ruining it for everyone else” – especially while service animals are constantly being turned away illegally – is especially irritating when we’re still fighting for something as simple as the right to be paid minimum wage for our work.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Liberal ableism

I consider myself to be a dyed-in-the-wool liberal, at least in the way that the term is commonly defined in the United States. Hesitant as I am to list all of my “liberal” qualifications, let’s just get some things out of the way: I am unapologetically feminist, pro-LGBQTIA rights, and am actively working to be anti-racist (which is an ongoing process). I am against capital punishment, as well as the current prison system. U.S.-ian imperial, cultural and economic hegemony across the globe does not sit well with me, and I am of the opinion that it should be actively dismantled. There are also other classically “liberal” opinions that I hold which would take entirely too much space to list here.

My own political stance is a huge part of the reason why ableism from people who are ostensibly my “allies” feels like such a giant thorn in my side. Because it seems that no matter how much we may align politically on the surface, some liberals seem to be incapable of viewing me — and other people with disabilities — as fully human, and treating us accordingly.

Many will protest, “But I can’t be ableist! I’m progressive/liberal!”  But here’s the thing: You can be liberal and also behave in an ableist manner, even without knowing it. It is indeed possible — even with the best of intentions.

Ableism is there when a liberal makes “jokes” about a condition or conditions that ou does not have, such as Restless Leg Syndrome. Or OCD. Or depression. Or schizophrenia. Or chronic fatigue syndrome. Or mental disabilities. Often, these “harmless” jokes are made at the direct expense of people with disabilities or health conditions — both physical and mental. Ableism is there when someone insinuates that diet changes (EAT ORGANIC!!11) and exercise (What? You mean you DON’T work out every day?!) are the solution to all bodily problems, including disabilities, mental health issues, and chronic health conditions. It’s there when someone calls those on the opposite side of the political spectrum “insane.”

It’s most definitely been there when “liberals” with whom I once got along decided that my illness — and the physical and energy limitations that come with my having a chronic illness — no longer suited them and their needs, and so they were free to do things like make unsolicited comments about my illness or how I manage it, or sigh and roll their eyes if I needed to slow down or take a break. Or, worse, tell me that although they have “sympathy” for my health issues, granting me access or even basic accommodations so that I could participate in an activity to the best of my ability just “wouldn’t be fair” to other (abled) group members. For these liberals, everyone deserves respect and opportunity — so it follows that disabled people absolutely deserve to participate in society! Until, of course, accommodations for PWDs conflict with the desired pacing or focus of the liberals in question — or until the PWD no longer conforms to the “angelic” and/or “in need of uplift by the kind liberals” image. Yet often, these same liberals still insist that they can’t be ableist — they’re so progressive!

This is precisely what makes liberal ableism so insidious, and so often hard to bring up (much like hipster ableism and, to some extent, hipster racism and liberal sexism, as well as liberal racism, though I do not wish to conflate all of these as the exact same type[s] of oppression) precisely because so much energy is dedicated to brushing off any discussion of ableism in liberal circles with some claim to liberal or progressive “cred.” Instead of deflecting and immediately whining, “But I’m not like that! I’m liberal!” many of these folks might do well to take a step back and consider how they themselves are contributing to so much of the offal that PWDs face daily with their actions and words.

An open letter to non-disabled people who use disabled parking spaces

Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,

I don’t care if you want to use the space “because it’s so convenient.”

I don’t care if you only “need” to use the space “just for a minute.”

I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”

The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.

Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.

This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.

Recommended Reading for 20 August, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

Wheelchair Dancer writes about Body Matters:

It’s about how we imagine living in other people’s bodies and the value we ascribe to them; it’s also about how we pass on the fear and vulnerability of change, injury, or pain in our own physicality. And that’s just on a personal level; things get more complicated when we think of the body as a political space.

From the Human Rights Watch, Malaysia: Disability Rights Treaty Ratification an ‘Important Step’. The treaty went into effect on 18 August.

“Malaysia has taken an important step to protect the rights of people with disabilities,” said Shantha Rau Barriga, disability rights researcher and advocate at Human Rights Watch. “But the convention should be seen as a springboard for changing Malaysian laws, policies, and practices that violate the rights of people with disabilities.”

[…]

Malaysia entered formal reservations to the Disability Rights Convention concerning the prohibition of torture and other ill-treatment (article 15) and the right to liberty of movement and nationality (article 18). It also made a declaration limiting the government’s legal application of the principles of non-discrimination and equality.

It’s Australia’s federal election tomorrow, so I’m devoting the rest of this to Australian issues.

From The Age: Anger as disabled pupils spend up to four hours a day on bus in the southern state of Victoria:

Parents say their children have suffered dehydration, toileting problems and emotional distress on the free bus service that runs children to and from specialist schools.

And, to end on a happy note, disabled Australian swimmers are doing beautifully in the ICP World Swimming Championships in the Netherlands. (Swimming is very very popular here in Australia, as I’m sure you can imagine. You can read some of the results in Swimmer Cowdrey wins third gold medal at the Sydney Morning Herald. We also did really well at the 8th World Deaf Golf Championships in Scotland!

Send your links to recreading[@]disabledfeminists[.]com.

On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions.  The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

Recommended Reading for August 10, 2010

Wheelchair Dancer at Feministe: On the Cover [trigger warning for discussion of violence]

Regardless of how disability plays out in Aisha’s world, the vast majority of readers of TIME live in a culture that understands disability as tragedy. As shocking. As among the worst things that can happen to you (bar death). Mainstream American culture thinks it knows disability and knows how to read it. Ms. Bieber has a history of photographing disabled bodies[. . .]But the work she does in the Real Beauty series does not come through in this photograph — perhaps because of the context and placement of the image. Here she (and or the editor) uses Aisha’s disability to trade upon the readership’s sympathies and their horror: this and other unknown kinds of disability are a direct result of the US departure from Afghanistan. This is not about Aisha; it’s about the message of the article.

Cripchick at Cripchick’s blog: tell me who i have to be to get some reciprocity?

don’t feel the way white supremacy creeps into your life and plops itself in the center?

in the last wk, white ppl have:

  • told me how to rearrange my words as to be more approachable.
  • made my need to have ppl of color time about them.
  • asked me invasive medical questions about my body.
  • thanked me over and over for teaching them about oppression.

Cara at The Curvature: Disabled Student Assaulted on School Bus; Bus Driver Watches and Doesn’t Respond [trigger warning for description and discussion of severe bullying]

Most readers here who have ever ridden a school bus will have at some point been on at least one end of bullying and harassment. Many will have at different points throughout their childhoods and adolescences acted as both bullies and victims — myself included among them. Big news stories since I stopped riding a school bus have left me with the impression that little has changed. School buses are places where bullies, harassment, and violence thrive. And as all current or past school bus passengers know, students with disabilities, particularly cognitive or intellectual disabilities, are especially vulnerable.

Daphne Merkin at the New York Times Magazine: My Life in Therapy

This imaginative position would eventually destabilize me, kicking off feelings of rage and despair that would in turn spiral down into a debilitating depression, in which I couldn’t seem to retrieve the pieces of my contemporary life. I don’t know whether this was because of the therapist’s lack of skill, some essential flaw in the psychoanalytic method or some irreparable injury done to me long ago, but the last time I engaged in this style of therapy for an extended period of time with an analyst who kept coaxing me to dredge up more and more painful, ever earlier memories, I ended up in a hospital.

William Davies King at PopMatters: In Defense of Hoarding

To be sure, a special label like compulsive hoarding seems required by many of the heart-rending cases they recount, people neck-deep in the slough of their despond, overwhelmed by more whelm than can be weighed. But sadness and dysfunction are hardly rare or new. What is new is the social imperative to ram open that front door. Bring in the wheelbarrows, the commanding case worker, and the camera—especially the camera, which enlists us all in the drive to evacuate these cloacal dwellings. Reality TV rolls up its sleeves, puts on the rubber gloves, and hoards the evidence while [authors] Frost and Steketee stand alongside the labyrinth, notepad in hand, giving that Skinnerian nod.

Vulnerability Indexes, Homelessness, and Disability

(Note: this originally appeared in a modified form on my tumblr.)

Vulnerability indexing is a new trend in homelessness services. It started in LA and NYC but is now being used a bunch of cities and localities of all sizes around the country. Instead of traditional outreach services, these projects use a “vulnerability index” survey to collect data from street-based homeless folks (rather than people in shelters, living in cars, doubled up on couches, etc). The data is then used to rank the homeless people, in order, by their “vulnerability,” or likelihood of dying within the next 12 months if they remain on the street.
That ranked vulnerability list is then used as a priority list to provide the people with services, starting with housing.

In providing housing and services, these programs use a “housing first” model, which means that unlike the vast majority of homeless housing services, individuals are NOT required to be clean of drugs/alcohol or engaged in mental health services prior to moving in. Once they move in, they’re provided with all the supportive services they want, including substance abuse treatment, mental health treatment, education and job training and placement assistance, etc.

I strongly support these programs and have been very excited to see them gaining traction in LA. (we have project 50 in downtown LA, project 30 in the San Fernando Valley, and others pending right now.) I also think these programs are of special interest from a disability perspective because of the extremely high prevalence rates of mental and physical disabilities among the long-term chronic homeless, and the way these disabilities make it difficult, if not impossible, for this group of homeless people to move towards stable permanent housing.

Here are some of the reasons I think this approach makes a lot of sense:

1. It targets the population that needs it the most, re-opens discussions about serving the chronically homeless
These projects target a subset of the homeless population – the chronically homeless. This group is defined as people who have been continuously homeless for at least a year. This is a minority of the overall homeless community (about 23% of all homeless), as most people cycle in and out of homelessness in periods of 3 months or so. The chronically homeless are generally single adults, not families, and generally have some kind of substance abuse issue and/or mental disability and/or physical disability. Most policy analysts believe that nearly every chronically homeless person has either a mental or physical disability.

This population is considered extremely difficult to serve, as lots have tried to engage with services in the past and not found it useful, so are considered “service resistant.” This is a nice way to say that most people and agencies have pretty much given up on them and don’t have any hope of bringing them into services, much less into stable housing. This is also a nice way to say that these homeless folks have correctly figured out that most homeless services aren’t appropriate or beneficial for them, so there’s little point in trying to engage with service organizations. This is partly because homeless services are not really set up for people with disabilities – getting necessary accommodations in a shelter is enormously difficult because of the already extremely limited resources available. If you have PTSD and need a door that locks in order to sleep, a shelter is not for you. If you have a service animal, shelters are not for you. If you need even a minimal level of nursing or medical care, shelters are not for you. (Not that the streets are better at accommodating disabilities.)

These chronically homeless people are, unfortunately but frankly, likely to die. the vulnerability index looks at factors that “place them at heightened risk of mortality,” including 3 or more hospitalizations or ER visits in the last year, aged 60 or above, cirrhosis of the liver or end stage renal disease, HIV+ or AIDS, or co-occurring psychiatric, substance abuse, and chronic medical conditions (tri-morbidity). When this tool has been used in communities, the most vulnerable person identified by the tool usually has all of those risk factors and has been homeless for 20+ years. Can you imagine how difficult it would be for a 62 year old man who is HIV+ and has a physical and mental disability and an active substance abuse problem to enter a shelter, especially after over 20 years of street homelessness?

Traditionally, this group of the chronically homeless is a group that people have given up on. Not just the public, but even homeless service providers. But the first iteration of this program, in the Times Square area of NYC, has produced before and after stories that are flooring. A woman who lived on the streets for 20+ years as a heroin addict is now housed and working as the concessions manager at the movie theater in Times Square. Looking at the before and after pictures seemed like she’d moved backwards in time – she looked 20 years younger. These are the people who we walk by on the street and feel like they’re beyond help and beyond hope. We just don’t think people can come back from that – and these programs are proving that assumption to be absolutely wrong.

Another benefit of focusing on the most vulnerable folks is that it communicates that same message – you are not beyond help or hope, there are programs that can provide meaningful and beneficial assistance – to the homeless community itself. If folks see that the agency promised housing to someone with a substance abuse disorder, a mental disability, and 20+ years on the street, and then delivered on that promise, they’ll be motivated to participate with the agency and trust them in a way they wouldn’t trust the shelters or outreach teams that hadn’t housed that guy in the past. These programs usually see a “tipping point” once the first few, most vulnerable, people are housed – then the rest of the community believes in the promise of potential housing and is motivated to cooperate with the service agency.

2. These programs make economic sense.
These targeted programs are usually seen as an alternative to simply ignoring the homeless and continuing to not spend city and county funds on them. Because there are not a lot of homeless services or programs targeting this group, the perception is that we are currently spending zero dollars on them, and any targeted program will be a dramatic increase in funds directed to the chronically homeless. This could not be more inaccurate. Actually, this group is consuming an astounding amount of public funds, through county health programs, police and jail funding, and public benefits such as food stamps or general relief funds. A recent study by the Economic Roundtable here in LA found that these most vulnerable folks are consuming over $8,000 in county funds PER MONTH, through multiple ER visits, jail time for quality of life infractions, and health care services received in jail. When these folks are moved into housing – even fully subsidized funding with inclusive supportive services – it’s a net savings for the government.

So this popular conception that we’re not already spending a bundle on these chronically homeless folks is simply inaccurate. We, as city and county governments, are already spending an enormous amount of county health funds, justice system funds, and social system funds on this group, with no discernible improvement in their quality of life or life expectancy. (This New Yorker article is a great discussion of how these costs can mount up for a single homeless individual.)

I know that cost savings is likely not the most important aspect of these programs for this audience, but these economic arguments are extremely powerful in persuading localities who do not understand why they would benefit from targeting funds and assistance at the chronically homeless.

3. The overall economic effects of the project help those homeless who aren’t directly targeted.
The economic benefits of these programs mean that there will likely be additional homeless service dollars available for use at other places in the homeless continuum of care – meaning that the program could generate benefits for the non-chronically homeless as well. This is much needed. Currently, in LA, it’s really hard to get into a homeless shelter. that’s because the “emergency” homeless shelters – where you’re supposed to stay for 30-90 days before moving into a “transitional” shelter – are backed up. Because all the transitional shelters are full. Because there’s no permanent housing available, so there’s nowhere to transition to from the transitional shelter. So the transitional shelter is serving as permanent housing and the emergency shelter as transitional shelter and the folks who need emergency shelter … sleep in their cars, or on the floor of a friend’s apartment. This system could benefit from some more cash to build permanent housing – money that might be available were we able to reduce the significant existing county expenditures on the chronically homeless.

4. Housing First and other harm reduction policies make sense.
Currently, a lot of housing placements require that the person moving in be clean and sober and, if they have a mental disability, be actively engaged in mental health treatment services. As you can imagine, this turns into a lot of chicken and egg problems. If you are a homeless person living in LA’s Skid Row, which is overrun with illegal drugs and alcohol, and have no money to afford rehab or treatment, you are never going to be eligible for that housing, even if you actively want to stop using. You don’t have anything to lose while living on the street – even going to jail gets you a bed and some food – so there’s absolutely no incentive to stop using. If you’re likely to die within 6 to 12 months, it’s likely that being high during the interim will be more pleasant than being sober.

If you’re placed in an apartment, though, you quickly learn that ongoing abuse is going to cause financial problems in affording the apartment and social problems in not disturbing other neighbors. There’s also an incentive – you don’t want to lose the apartment. The programs have found that people are motivated to enter treatment when receiving housing, even if it’s not a requirement of maintaining housing. There have been similar results with mental health treatment.

Even aside from the incentive effects, these Housing First programs are humane. I know a bunch of people who wouldn’t be able to get apartments if they had to show clean drug tests to get the apartment and to maintain tenancy, but they’re allowed to do that because they have money.

SO, in short: even though it sometimes feels a bit squicky to be ordering homeless folks in terms of likeliness to die and priority for housing, these programs make a lot of sense conceptually and have had amazing effects on the ground. Of the 50 most vulnerable in downtown LA, all of which had disabilities of some kind, 41 are currently in housing. I don’t see how this could have been done any other way.

Catch-22 Policies: Medi-Cal and Transplants

I ran across a situation recently that required me to figure out how the Medi-Cal program – California’s implementation of the Medicaid program, which provides government-funded health insurance to low-income people – handles people who have received transplants. What was happening was so illogical and ill-conceived that I was astounded to find out that it was exactly what the regulations and structure of the program wanted to happen. This is an example of state and federal policy just Not Making Sense.

Not all low-income people can qualify for Medicaid, but have to have a “linkage” to the program in addition to being poor. One of the linkages is have a disability that meets the Social Security Administration’s (SSA) definition of “disabled”: having a physical and/or mental impairment that prevents the individual from engaging in “substantial gainful activity” for at least 12 months. “Substantial gainful activity” just means work where the individual is earning a certain level of wages that SSA thinks is enough to support themselves, a fixed dollar amount that SSA adjusts every year. So, basically, a person has to be completely unable to work for at least a year in order to be eligible. Once they start getting Medi-Cal on the basis of disability by proving they meet that standard, the program will periodically re-evaluate them to see if their condition has improved and if they could now return to work. If the Medi-Cal program thinks the person’s disability has improved, they’ll be cut off the program and no longer have access to health insurance.

This reflects the underlying policies and values that caused the program to exist – policymakers want people to work and support themselves and will only step in to provide benefits if there’s some compelling reason the person is unable to do so. (Note: I have a lot of problems with those assumptions and am not endorsing them myself, just outlining what we can assume the policymakers believed and intended.) So, if a person is later able to support themselves through work, we’ll cut off the benefits because there’s no longer a compelling reason for them to not be supporting themselves.

It’s easy to anticipate a number of potential problems with those policies, mainly around the cyclical nature of many disabilities. But I want to focus on specifically is people who have received organ transplants. When a person needs a transplant, they will certainly meet the disability standard and be able to get on Medi-Cal. Someone in dire need of a kidney or liver transplant is not going to be working 40 hours a week – they are likely going to be in the hospital for a lot, if not all, of their time. So they’ll get Medi-Cal coverage, which will pay for the transplant surgery and hospitalization and all that sort of thing.

After the transplant, time goes by. SSA says they will assume someone will continue to be disabled for one year after a transplant operation, but after the first 12 months, the Medi-Cal program will start evaluating the person to see if they continue to meet the disability standard. Most times, people won’t, because recovering from transplant surgeries is difficult and takes a long time, even if there’s no significant complications or organ rejection problems. So people continue to be covered by Medi-Cal.

Now, some more time goes by. And for some people, the transplant has resolved their underlying health problems. (This certainly isn’t true for all transplant recipients.) They’ve recovered from the transplant surgery. They’re doing well. And when Medi-Cal comes around to re-evaluate their disability, the may not meet it anymore. They may not be so severely impaired that they’re unable to do any work at all. And for most people, this would be a good thing. They’re getting better. They’re improving. They have more ability to function, to care for themselves, to be independent. And most of them are immensely excited about and proud of that progress. They have worked hard for it.

But it can mean that their Medi-Cal gets cut off. That their health insurance goes away entirely. And this is an enormous problem, because no matter how well someone has recovered from transplant surgery, she has to keep taking immunosuppressant anti-rejection drugs so her body doesn’t begin to reject the transplanted organ. And my understanding is the vast majority of transplant recipients have to keep taking anti-rejection medications for the rest of their lives. So when a transplant recipient’s health insurance gets cut off – how are they supposed to afford those expensive immunosuppressants? The Transplant Recipient’s International Organization estimates that “the average annual cost for immunosuppressive medications for kidney transplant recipients is approximately $11,000.Transplant Living estimates the costs to be even higher, ranging from $17,200 to $27,500 per year, depending on which organ was transplanted.

For transplant recipients cut off Medi-Cal for disability reasons – which means they are still poor enough to qualify for the program – those costs are completely beyond reach. This is especially true because the person has likely also just lost eligibility for cash benefits from Social Security for no longer meeting the disability standard – so they must go out and figure out how to start earning enough to pay for rent, food, utilities, transportation, and the medication costs. And if they can’t manage to get enough money for the drugs? Their body will start to reject the transplanted organ, and they’ll go into kidney failure, or liver failure, or heart failure, or other organ failure. At which point they will go back to the hospital, extremely ill, and go back on the transplant list . At which point they will be so sick they can get back on Medi-Cal, which will pay for their hospitalization and the next transplant surgery.

Obviously, this is immensely cruel. Requiring someone who has just managed to recover from the first transplant surgery to abandon their medical treatment so they get increasingly sick, potentially fatally sick, to undergo another invasive and traumatic transplant surgery – if an organ even becomes available! – is beyond inhumane. But even from a purely economic perspective, it makes no sense. Certainly immunosuppressant medications are expensive – expensive enough that people can’t afford them without help, so it’s not without cost for the Medi-Cal program to pay for them. But organ failure and transplantation are way more expensive in comparison. Looking at a kidney transplant, the 30 days of hospitalization during pre-transplant organ failure cost $16,700; organ procurement costs are $67,500; admission during the transplant procedure and recovery is $92,700; the physician for the transplant surgery is $17,500; the post-transplant admission is $47,400; and then the immunsuppressant drugs cost $17,200. A report by Milliman Research (pdf) has even higher numbers, estimating the cost of a liver transplant at $523,400.

I think there are compelling arguments for a policy change that fit within my values and priorities – to avoid human suffering – but this cost data suggests a strong argument for a policy change that fits within the values of those in power – reducing costs. To make this argument to those people, I would analogize: if you buy a house, you put in maintenance, you don’t just abandon it to fall apart. It makes sense to put in upkeep and maintenance on property to protect the value of the property. The Medi-Cal program is buying these people organs, it should maintain those organs. But that’s not what the program rules say should happen. That’s not the policy. Continue reading Catch-22 Policies: Medi-Cal and Transplants

Celebrating Us: Notes for an address at the 7th Annual Simply People Celebration

John Rae is a disability rights activist in Toronto, Ontario, Canada, and a member of The Alliance for Equality of Blind Canadians. This speech was delivered by Rae on July 20, 2010 as part of the Simple People celebration, which is in turn part of Toronto’s Disability Pride.

Tonight is for us, and about us! Tonight is a time for us to celebrate our accomplishments and to redouble our efforts to bring about true equality for all persons with disabilities in Canada and around the world.

This year, Canadians with disabilities are celebrating Canada’s ratification of the UN Convention on the Rights of Persons With Disabilities (CRPD). While it may not provide us with a lot of new rights, it sets out in far greater detail than any human rights code or the Charter of Rights and Freedoms ever did what a truly accessible and inclusive Canada can look like, in important areas of life that are critical to our participation in the economic, political and social life of our communities – transportation, employment, education, communications, access to information, etc. The Convention also requires Canada to collect and disseminate data and to submit a comprehensive report to the Secretary-General of the United Nations within two years after ratification and every four years thereafter on measures taken, and civil society is to be directly involved in the development of these reports. This means involving us!

The development of this Convention traveled a unique path. It took the least amount of time of any UN Convention to be concluded, and it involved far more participation from civil society than ever before. That means involvement by us, and many groups representing persons with disabilities participated actively in the negotiations at the UN that resulted in this Convention. There are important lessons to be learned from having this kind of direct participation in developing any new initiative that directly affects our lives.

Last year, the President of the Alliance for Equality of Blind Canadians, Robin East, developed a new way of addressing our needs and aspirations. He coined the new phrase, “rights holders.” We are Rights Holders! What does he mean?

Too often, governments like to lump all of us, consumers, parents, service providers, etc. under the same umbrella of “stakeholders,” and while all of these groups may very well have a “stake” in the outcome of a new piece of legislation, policy or program, we are the ones most affected. We are different, and must see ourselves as “rights holders,” and not just another group of mere stakeholders. What this means is that we must occupy the primary and preeminent place at any table that is discussing anything that directly impacts our quality of life.

You are all familiar with the favourite phrase of the disability rights movement, “Nothing about us without us!” Now that Canada has ratified the UN Convention, it is critical that we rights holders participate as directly in its implementation as we did in its design, to ensure that it makes a tangible difference in the lives of all Canadians with disabilities, to make it become Canada’s national disabilities Act.

By contrast, the much heralded Accessibility for Ontarians With Disabilities Act (AODA) continues to move at a snail’s pace. After over five years, only one of the initial five accessibility standards has been issued as a regulation, though more are expected later this year. It is hard to imagine that Ontario is even close to being on track to achieve full accessibility by the far off date of 2025, and it is hoped that Canada’s ratification of the UN Convention will spur some renewed commitment and action to the AODA.

It is too often argued by representatives from governments and the obligated sectors that they “would like to do the things we wand and need, but these changes will simply cost too much.” We have countered that the real barriers are not cost, but a lack of political will and a question of priorities.

The Ontario Human Rights Code has covered persons with various disabilities since 1982. Governments, the public and private sectors have had over 25 years to make their premises, websites, products and programs fully accessible. How much more time do they need? If they have ignored their responsibilities and dragged their feet over all these years, stop blaming us – stop blaming the victims. It’s simply not our fault.

After the preposterous expenditure of an estimated $1.3 billion (that’s billion) on security for the G-8 and G-20 Summits, and countless millions of dollars on our involvement in the war in Afghanistan, persons with disabilities never want to hear the cost excuse ever again … never again! Resources are not unlimited, but whenever a government really wants to do something, it seems to magically find a way to finance its priorities.

So what am I asking you to do?

1. Write letters to the Editor of your local newspaper, raising disability issues;

2. Ask all candidates for Mayor and Council in the upcoming municipal election about their platforms, and what they commit to do to advance our agenda;

3. Get more involved in the disability rights movement. Join a group like the Alliance for Equality of Blind Canadians (AEBC), Citizens With Disabilities Ontario (CDWO) and sign up to receive updates from the Accessibility for Ontarians With Disabilities Act alliance, or find the consumer organization in your area that best represents your issues and ideas.

In closing, I want to mention just one more point. Many of us who have been on the front lines, in the leadership of our movement for many, many years are getting old and growing tired. We need you to get more involved. We need your energy, skills and new ideas. We cannot expect the system to hand us our rightful place, our history teaches us that it rarely does! Moving our agenda and achieving our goals is up to us. We must make it happen.

Some of you will be familiar with the phrase “Full Participation and Equality.” It’s an excellent phrase. It’s not a new phrase. It was the theme of the International Year of the Disabled Person (IYDP) way back in 1981.

Since then, we have come a part of the way up this road, but we still have far, too far to travel. Today, we seek legislation and new programs that will lead to that elusive goal, but today we must spend far too much of our time preventing the introduction of new barriers.

It’s time governments, the private and public sectors recognized our value, and commit to work with us to realize the IYDP motto.

We want our rights. When do we want them? Now!