Welcome to FWD retrospective week! We’ve taking a look back at some of our favourite posts on a variety of themes over the next week.
I’ve been following the Keeping All Students Safe Act, an important piece of legislation for keeping disabled students safe in school. I’m horrified to learn that the Senate version of the bill, S. 3895, actually includes measures allowing for restraint and seclusion, which I missed when I posted about it earlier this year. (Mea culpa!)
“COPAA cannot support the current legislation because S.3895 permits restraint and locked seclusion as planned interventions in students’ education plans, including behavior plans and individualized education programs,” wrote the group’s executive director Denise Marshall. “By allowing restraint and locked seclusion as planned interventions, S.3895 weakens protections under the Individuals with Disabilities Education Act (IDEA) and legitimizes practices that the bill seeks to prevent.” (source)
If you are a USian with the time, please write your Senators and ask them to remove this portion of the bill. Restraint and locked seclusion are never appropriate for students and they most certainly do not belong in individualised education programmes. It’s time to take abuse off the table when it comes to options for disciplining students!
When I hear people joke about cutting and self harm, I often shake my head with amazement at how little they seem to understand that behavior. I’ve always kind of assumed that if someone went to a hospital seeking help for their own self harm, they’d find people who were better informed and better equipped to help them. Well, according to the results of a recent survey of National Health Service professionals in the UK, that’s not the case:
Less than half of NHS professionals believe they or their team have had sufficient training to undertake assessments of people who self-harm, according to research by the Royal College of Psychiatrists. The College asked more than 1,500 of its members whether they felt they had adequate training and less than half of respondents felt their training was insufficient to carry out assessments… 26% of staff felt that they did not know about self-harm to communicate effectively (59% of staff in the emergency department).
As one of the members of the working group involved in the survey and report points out, this is a serious problem: “When a person turns up to hospital having harmed themselves, this may well be the first time they have had contact with the health service. Failure to deal effectively with a person at this stage can have major repercussions. It may discourage them from returning in a later crisis and stop them getting the care they need.” It’s also a problem because the general stigma against people who self harm goes unchecked: “large numbers of healthcare staff have a profoundly negative reaction to patients who harm themselves, compared with those with physical illness, and … this is likely to be reflected in the quality of clinical care.”
Not only is this problem serious, it’s also pervasive, as the report estimates that 4 in 1,000 people in the UK self harm, resulting in 170,000 people presenting themselves at hospitals for help with self harm every year. And of course, members of some groups are more vulnerable than others, including asylum seekers, minority ethnic groups, prisoners, QUILTBAG people, and veterans. Young people are also more likely to engage in self harm. And these people are not getting the help they need, the help they deserve.
(You can download the full report here.)
s.e. emailed me an alert to this Atlantic post by Derek Thompson about the potential hidden costs of failing to extend unemployment insurance benefits, with a warning that I would likely ‘enjoy’ it. So I clicked through with trepidation. Rightfully so. I’ll excerpt the relevant piece here so you don’t need to reward this nonsense with pageviews (and if you do, avoid the comments, which are full of “unemployed people are fundamentally lazy” tripe):
Consider this statistic, from Peter Orszag at an event in DC called The Future of American Jobs Part II: The number of applications for the Social Security Disability Insurance has increased from an average of 500,000 per quarter in 2006 to 750,000 in 2010. Why? Well, it’s unlikely that American disabilities themselves have increased by 50 percent in the last four years. It is more likely that healthy Americans discouraged from the awful job market have sought out disability insurance and collected Social Security money even though they’re not actually disabled.
SSDI requires that its recipients be unable to work. Unemployment insurance, on the other hand, requires that its recipients look for work. Like any government program, UI can be gamed, and sometimes it surely is. But the fundamental point holds: If we stop supporting unemployed people with cash, there is a risk that we kick them out of the labor force onto disability insurance, where we pick up the tab by paying for them through SSDI not to work and not to look for work.
WHERE TO EVEN BEGIN, amirite? Let’s start with identifying the huge, glaring factual error in the argument – the assumption that all SSDI requires for eligibility is “that its recipients be unable to work.” You may not be surprised to learn that the long term disability insurance program through the federal government actually requires that the individual’s inability to work be due to a disability, rather than due to a lack of jobs at their skill level, or a lack of jobs that pay living wages, or any number of other reasons that a person would be unable to work. Yes, this disability benefits program actually has requirements about having a disability! And the Social Security Administration requires quite a lot of verification from medical professionals (who it considers more objective and reliable than people themselves) that it independently reviews and assesses before determining whether a person has a disability that qualifies them for SSDI. You cannot just walk into a Social Security office and demand SSDI benefits, no matter how long you’ve been out of work.
Now let’s look at the statistic he is using to lend legitimacy to his argument: “The number of applications for the Social Security Disability Insurance has increased from an average of 500,000 per quarter in 2006 to 750,000 in 2010.” What does this statistic tell us? It does not tell us anything about the trends, if any, of people receiving SSDI – just the number applying for it. Granted there is some cost to Social Security to review and assess these applications, but the main cost Thompson is raising is the amount of money spent on SSDI benefits – about which this statistic tells us absolutely nothing. Even the knowledge that there are 250,000 more SSDI applications per quarter this year than in 2006 tells us nothing about whether the application (or approval) rates are anywhere near the actual underlying prevalence rates. Even if disability rates have remained perfectly stable, we have no idea whether the 500,000 applications per quarter in 2006 was undercapturing the number of people who were actually eligible for SSDI.
(This built-in, unstated assumption that the starting point in increasing disability benefit rates was the “correct” or desired rate and that any increases are dirty lying cheating fraudulent people is extremely common. You see it in discussions about changes in special education enrollment, rates at which students are identified with learning disabilities, and more. And the assumption that the lower rate correctly reflects the actual prevalence in the population is so ingrained that people, including Thompson, do not even state that they are making such an assumption. It should be obvious to the reader, they imagine, that lower disability benefit rates are right!)
But Thompsons’ main point – that people currently in the workforce may shift to disability benefits if they are unable to find work – gets to the conflation of “disabled” and “unemployable” that I’ve discussed before. There are certainly people who would meet the criteria for SSDI who are employed right now, influenced by any number of factors including the stigma against not working, the difficulty of verifying eligibility for SSDI, and the likely higher income available through work. Unemployment may motivate those people towards SSDI, but so could a bunch of other things, like failure to provide reasonable accommodations at work and employment discrimination against people with disabilities. But a whole lot of people who are unemployed are simply ineligible for SSDI, because they’re unemployed for economic reasons and do not have a disability that would qualify them for SSDI.
A potential takeaway from this kind of thinking is that for reasons including saving money on disability benefits, we should mitigate and eliminate barriers to employment for people with disabilities. But this post concludes that because everyone on unemployment could pull down the higher SSDI benefits if they got the notion, we should support the unemployed. That’s not relevant either to people with disabilities or without them and is fundamentally nonsense.
Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.
1. Ableism has a dictionary definition.
The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.
[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.] orig. U.S. Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people. 1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.
It defines ableist as “Characterized by or exhibiting ableism.”
I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.
2. Ableism can be deliberate.
B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]
C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?
‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’
‘I’m sorry,’ she said but I interrupted.
‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’
E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):
Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.
Actual quote: “Don’t let anybody intimidate you”.
3. Ableism has an academic definition.
Here’s a good example:
Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.
Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.
You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.
Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.
4. Ableism can be accidental. This doesn’t make it okay.
A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.
C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.
5. Ableism kills.
Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer
Affirmative action has to be among one of the most contentious, controversial, and misunderstood social policies. I encounter all kinds of bizarre attitudes when it comes to talking about affirmative action, not least of which is people who insist on calling it ‘reverse discrimination’ in some sort of backhanded attempt at suggesting it’s just as evil as denying people opportunities on the basis of being female, say, or a person of colour, and should be abolished on those grounds. Because, oogity boogity, under affirmative action, all people are not considered blank slates with universal experiences, and thus, it’s a discriminatory policy.
Here’s what affirmative action is: A policy and programme adopted in many regions of the world to encourage employers and educational institutions to consider the history of discrimination against certain classes of people when it comes to admission and hiring decisions. Such policies usually cover women, people of color/nonwhite people, and people with disabilities. The goal of affirmative action is to counteract the effects of centuries of discrimination to create more opportunities for oppressed groups of people by not shutting them out of education and employment opportunities, acknowledging that prejudices are often deeply internalised and people can’t overcome them by sheer force of will. (And are often not aware of how deep they run.)
Here’s what it isn’t: A demand to always hire/admit the marginalised person, no matter what. Yet, it’s often framed that way, as seen in the ‘reverse discrimination’ slang. Everyone, it seems, has a sob story about how ‘someone they know’ didn’t get a job because there was a less qualified Black woman or disabled man or someone else who was there to swoop in and take the employment opportunity away, riding smugly on a cloud of affirmative action1. I have had dyed in the wool liberals informing me with clear, innocent faces that their white, middle class, nondisabled, heterosexual, cis friends and relatives have been horribly oppressed by being passed over in favour of ‘underqualified’ marginalised people who just happened to compete for the same jobs/places at school. They inform me that this is unfair and awful and should stop immediately because it’s wrong.
Here’s what affirmative action is about: When you have, say, an employer who is considering a group of job applicants, that employer is asked to consider the applicants equally. Not to, for example, throw out an application from a woman who uses a wheelchair for mobility because it will be ‘too hard’ to accommodate her. To give everyone reasonably qualified a chance to interview and to honestly and fairly evaluate applicants for a job, rather than deciding that someone is automatically unfit on the basis of personal characteristics. And, yes, if you have two equally qualified candidates, one of whom happens to be a member of a dominant group and one of whom does not, to consider preferentially hiring the person who has not benefited from discriminatory practices throughout life. No affirmative action policy demands that people hire the less qualified people, deciding whom to hire solely on the basis of who is the most oppressed.
People talk about ‘quotas’ and they talk about how businesses and educational institutions ‘get in trouble’ if they don’t have enough ‘token minorities’ and they miss the point entirely. I see this depicted everywhere from pop culture (Cuddy yelling at House for not having a female physician on this diagnostic team) to casual interactions with people who inform me that they ‘would’ apply for a job somewhere but ‘some Latina will probably snag it from me anyway because they’re worried about not having enough brown faces behind the front desk so what’s the point.’ Actual cases where businesses and schools have been punished for failing to adhere to affirmative action policies haven’t involved a government auditor checking to see how many marginalised people they have, but documented discrimination against marginalised groups in interview and admissions policies.
Do affirmative action programmes in colleges and universities ask for more leeway on things like test scores? Yes, they absolutely do, and there’s a reason for that: People in oppressed classes are less likely to do well on standardized tests, for a whole lot of reasons ranging from unequal access to educational opportunities to biases built in on the tests themselves. This means that, yes, when an applicant identifies as poor, for example, that the school will weigh that in the student’s application and will consider the impact that poverty might have on test scores and academic performance. The school won’t say ‘oh, we should let a clearly unprepared student in because she’s from a lower class background,’ but the school will say ‘this student clearly has potential, even if she’s not there yet, so let’s give her a chance, given that she’s had an uphill slog to get to the point where she can even apply for college.’
What this asks people to do is to consider the historic role of discrimination in access to everything from education to employment, to recognise that because of the widespread and deep biases in society, some people can’t access the qualifications/experience that others can. And, yes, affirmative action does ask people to consider marginalised people preferentially, in the hopes of balancing out internalised biases and attitudes; trust me, people, in terms of how people actually behave, it’s a wash.
People say this is ‘unequal treatment’ and that ‘if you want to be treated like everyone else, you need to be held to the same standard.’ What they miss is that the standard is inherently discriminatory and biased. Holding everyone to the same standard is effectively an act of discrimination, because it demands that people fit into a mold they can never fit into, reach goals they can never attain, because the deck is stacked against them from the start.
It’s an attempt to compensate for privilege to say that the lived experiences of applicants should be considered to contextualise their applications. Not an act of discrimination. A corrective measure, an attempt to address and rectify an entrenched culture of prejudice by creating more chances for people who have historically been denied those chances, is not ‘reverse discrimination.’ And I’d like to humbly suggest that people retire that particular slang term, post haste.
- I note that this usually includes the assumption that the marginalised candidate was automatically, inherently, less qualified. ↩
Los Angeles County, where I live, is incredibly diverse, both racially and linguistically. According to the Asian Pacific American Legal Center’s 2008 report on Language Diversity and English Proficiency in LA County (pdf file), more than half of Los Angeles County residents speak a language other than English at home. “The 10 most frequently spoken languages countywide are: English, Spanish, Chinese, Tagalog, Korean, Armenian, Vietnamese, Farsi, Japanese and Russian.” The report lists 39 distinct languages and almost 10,000 residents speak another language not on the list. About 29% of county residents are Limited English Proficient (LEP), which means they have some degree of difficulty communicating in English.
All of these people will have some contact with the health care system at some point in their lives and ideally, at more than one point. And, according to the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality, having a health care provider who speaks the same language as the patient has lots of important benefits to patient care (internal cites omitted):
A growing body of literature finds that language concordance between patients and providers (i.e., both speak the patient’s primary language well) results in greater patient understanding, leading to increased satisfaction, better medication adherence, greater understanding of diagnoses and treatment, greater well-being and better functioning for persons with chronic disease, and more health education.
The report goes on to note that only some of these problems can be mitigated by having the conversation interpreted. Using an interpreter can also disrupt the human connection between provider and patient and curtail full discussion. Interpretation, no matter how competent, is somewhat cumbersome and inefficient. This all means that having the health care provider be bilingual is by far the best solution, both for patients and providers. And often, cultural conceptions of health issues like pain, disability, and mental illness can be very important in understanding how a patient is describing symptoms or experiences, so a native speaker is the best.
The problem, of course, is that not all health care providers are bilingual. This means those who can speak another language are relatively valuable, so they can be more exclusive or take more high-paying jobs. If you are a patient who can afford to pay high rates or has great insurance, you may be able to get a provider who speaks your language, but you’re not guaranteed. And if you are a poorer patient and rely on emergency rooms and county health clinics for care, you just have to hope to get lucky. As I once heard it put, “If you’re a Cambodian therapist, you can basically write your own ticket. You’re not going to work at the County Department of Mental Health.”
So how can we go about getting more bilingual health providers, especially for relatively low-paying jobs to care for low-income patients? There’s no obvious answer. Here are some ideas, and their potential drawbacks:
- Require all health care providers to become fluent in another language. Providers all go through some training and licensing procedures, so we could build in a language requirement. There are some obvious difficulties – how would we ensure languages were proportionally represented? would we match providers to areas where there was a need for the language they spoke? how do we make sure someone learns, say, Hmong? would the cost of administering all those language proficiency tests be better spent elsewhere in the health care system? It also doesn’t serve our goal of having providers be native speakers.
- Recruit more native speakers of non-English languages to become health care providers. This could take a lot of different forms – scholarships and incentives for these people to enter training programs or medical schools, reaching out to younger kids to stimulate interest in health care professions, providing tutoring or other support resources, or a number of other methods. Most of these things would take a very long time before they resulted in a change in the makeup of health care providers. It’s also unclear how effective any of these methods are, and how much they cost.
- One possible solution is always to throw money at it. We could dedicate a lot of funding to paying big salaries for providers who speak other languages. While that would probably work, and relatively quickly, it would cost a lot of money. And would continue to cost a lot of money to maintain. And, most importantly, would not do anything to increase the total number of health care providers who teach non-English languages and if more were induced to enter the profession because of the high salaries, it would cost more and more money over time. To compensate, there would be fewer and fewer health care providers overall, or some other significant effect on the health care system from the significantly shrinking resources.
Personally, I support a little bit of all three. (Equivocation is a policy-maker’s prerogative.) Increasing incentives for health care professionals to know and learn non-English languages, aggressive recruiting for native non-English speakers to become health care professionals, and paying bonuses or other incentives to bilingual providers. To make the best of the current situation, I also support training interpreters and ensuring they’re used appropriately.
Are there other policies you think would help the problem?
This post originally appeared on this ain’t livin’.
A 1988 amendment to the Fair Housing Act in the United States specifically banned housing discrimination on the basis of ability status. Under the law in the United States, landlords, mortgage lenders, and management companies legally cannot discriminate against people with disabilities when it comes to renting and selling housing. ‘All types of housing transactions,’ according to the Department of Justice, are covered.
Specific provisions are included to oblige landlords to make ‘reasonable accommodations.’ If housing has a no pets policy, service animals must be permitted. Tenants who need to make modifications to make their residences accessible must be allowed to do so, although landlords are not required to pay for them. Other accommodations that might be necessary must be permitted, under the law, if they withstand the ‘reasonable’ test.
Provisions were also specifically provided to regulate construction of new housing. Landlords are not required to retrofit old housing, but companies building new housing must build it in ways that meet accessibility standards. At multiunit developments in particular, apartments designed to accommodate wheelchair users must be designed and implemented. This is designed to increase housing access for people with disabilities in the future, and it also benefits older adults, who are not necessarily disabled, but do appreciate modifications made for people with disabilities, like shower chairs and grab bars.
So, under the letter of the law, housing discrimination shouldn’t happen to people with disabilities1. Yet, in actuality, discrimination happens all the time. The Department of Housing and Urban Development released a study in 2005, ‘Barriers at Every Step2,’ documenting discrimination against people with disabilities. Using a time-honoured HUD technique known as paired testing, HUD used functionally identical applicants for housing, one disabled and one nondisabled, and compared responses.
What they found is that, well, landlords discriminate against people with disabilities. Realtors discriminate against people with disabilities. So do mortgage lenders. Management companies. Workpeople. All sorts of people involved in housing transactions. As many people with disabilities could have told HUD if they were asked, and as many did in reports to the agency documenting discrimination and asking for help.
Sometimes, housing discrimination is the small cut. It’s arriving at a house for rent and seeing that there’s a step to the door, a bathroom too narrow to wheel a chair into, stairs. In housing that’s actually accessible, it takes the form of turning in endless applications and being assured ‘you’ll get a call’ or ‘oh, we just rented it,’ it’s being asked probing questions about disabilities, ostensibly to see if you can afford the rent, but really with the goal of prying and snooping. Deaf applicants with landlords who refuse to communicate with them. Applicants who ask if they can make a reasonable modification, say, like installing a ramp to get in the front door and being told ‘no.’
This isn’t legal, but it happens anyway. Just like it’s not legal to refuse to rent to a single mother, or a young Black man, or a woman, on the basis of those traits alone, and it happens anyway. Housing discrimination is widespread and it’s entrenched. A lot of landlords are ignorant of the fact that there are laws governing this kind of activity, and others know, but don’t care. Because they know it’s highly unlikely that these laws will be enforced. They can continue on their merry discriminatory way as long as they like.
Few people report housing discrimination, because, when you are searching for a place to live, reporting discrimination isn’t high on your list of priorities. You sigh and cross that information off your list, you tell friends not to bother with that house if it comes up for rent in the future, and you move on. You’re struggling to pack, and get organised, and deal with a thousand tiny details that aren’t going to go away on their own. You don’t have time to file a discrimination complaint. To pull together the documentation. To go through questioning and court and investigations. You are too busy trying to survive.
There are occasional victories, which shouldn’t have to happen at all because the victims shouldn’t have been discriminated against in the first place, but these victories are thin on the ground. HUD uses what funding it can to identify and pursue egregious cases, in addition to following up on complaints filed by people who experience housing discrimination, but it can’t keep up. No one could keep up.
Because this is all the result of entrenched social attitudes. Combating discrimination with laws is great, because those laws provide a framework for identifying, investigating, and prosecuting discrimination, but legislation alone cannot be relied upon to address issues like housing discrimination. As long as people genuinely think that people with disabilities are bad people or difficult tenants or unreliable or ‘difficult,’ they are going to continue refusing to rent to us, refusing to grant us loans, refusing to show us houses for sale.
We need a two pronged approach, which is why I applaud organisations that are working on public outreach and education to familiarise landlords with the law so that they can learn, you know, why legally they should not do this, while also providing people with education about why it’s not ok ethically, as a human being, to engage in housing discrimination. These programs realise that the only way to stop housing discrimination is not with a law, is not on a case by case basis, but rather by actively fighting social attitudes that contribute to discriminatory beliefs and practices.
Our housing options are limited by so many things. Many of us don’t make very much money, and can’t afford the cost of living. Many of us have disabilities that render many types of housing inaccessible. Must we also endlessly combat discrimination from landlords and other people of power when it comes to property transactions?
As some of you who follow me on Twitter know, I spent the weekend in Kansas City with my grandfather, who had experienced an as-yet-to-be-diagnosed health crisis and was in the hospital. (Nothing is dire and he’s expected to make a full recovery and be discharged in the next week or so.) At home in Los Angeles, most of my hospital experience is with Los Angeles County Hospital, an enormous facility that is massively overloaded in trying to meet the health care needs of Los Angeles County’s indigent population. In Kansas City, I was spending time in the Rehabilitation Care wing of what seemed to be a very well funded private hospital. And the differences were monumental.
Los Angeles County Hospital serves about 39,000 inpatients a year, with over 150,000 emergency room visits a year. This is utterly massive, and has led to a lot of complaints about overcrowding, with allegations that emergency room visitors wait an average of 35 hours to be seen – sometimes without even having their vital signs taken. A recent LA Times story showed that likely because of administrative policy hiccups, a patient was admitted to another county hospital and was an inpatient for two days before being assigned a doctor. In another county facility, since closed down, a woman waiting to be seen in the ER bled out and died in the waiting room without being seen. Having spent some time at those hospitals, I can attest that while the relatively new buildings are pretty nice, the old building, in which a lot of care is still provided, feels like a rickety relic of the early 1970s, with sliding metal doors that make the patient rooms feel like drawers in a filing cabinet.
In contrast, this other hospital felt like a palace. There was free valet parking for outpatients. All of the rooms were private and spacious, with room for 9 visitors to fit inside and with a window looking out on trees in gorgeous fall colors. The nurses all knew my grandfather’s name, and his wife’s name, and my name, and my mom’s name. The emergency room in the facility had a gorgeous waiting room looking out into an interior courtyard with fountains and plantings and even a creek running through it. I visited that waiting room often, because that’s where the vending machine with the Diet Coke was, and I never saw more than a handful of people there. Certainly nobody was going to die there without being seen.
Describing the two hospitals like this, I can guess which one we would all choose for ourselves, our loved ones, and our friends. (The nice hospital, just to be clear. I’d rather be at the nice one.) But often when we’re making policies – especially policies for the health care of low-income people – policy makers are not thinking about how they would like to be taken care of, the facilities they would like to be in. They are making policies for other people, policies they know will never apply to them.
That’s why I’m such a big fan of the concept of the “veil of ignorance.” The idea comes from American philosopher John Rawls’ book Theory of Justice, considered an important text in political philosophy. The veil requires a person to create a standard of justice without knowing what place or value they will have in that society. As Rawls described it:
Among the essential features of this situation is that no one knows his place in society, his class position or social status, nor does any one know his fortune in the distribution of natural assets and abilities, his intelligence, strength and the like. I shall even assume that the parties do not know their conceptions of the good or their special psychological propensities. The principles of justice are chosen behind a veil of ignorance.
I like this idea so much. This would require us to make health care policy without knowing whether we would have the most super expensive fancy health insurance policy possible, or have no health insurance and depend on the indigent care available through the county; without knowing whether we would have a disability or be in perfect health; without knowing any of the categories or identities we would be a part of.
It is, of course, impossible to think about policies without drawing from personal experience, but I believe that policymakers should do their best to assume this veil of ignorance. At the very least, they should consider how their policies will apply to and affect the most disadvantaged person possible, to understand the full scope of potential problems that could be created by the policy. Now if only we could get voters to look at things this way…
There’s been a significant push towards deinstitutionalisation in the United States over the last few years, in no small part due to the Olmstead decision, a major ruling by the Supreme Court that I discussed in a bit more detail here. Short version: Unnecessary confinement of people with disabilities has been deemed a civil rights violation. As a result, the Department of Justice as well as a number of disability rights groups have been suing in a number of states to get people out of institutions.
In Georgia last week:
A sweeping agreement this week between the Justice Department and the state of Georgia highlights an aggressive new campaign by the Obama administration to ensure that people with mental illness and developmental disabilities can get services in their communities — and not be forced to live in institutions.
As part of the accord, Georgia agreed to specific targets for creating housing aid and community treatment for people with disabilities. Those with disabilities have often cycled in and out of the state’s long-troubled psychiatric hospitals in the past. The state said it will set aside $15 million in the current fiscal year and $62 million next year to make the improvements. (source)
This is huge, and will get more help to people who need it in Georgia. The DOJ has been on fire this year with Olmstead-related cases, and the Obama administration has been a major player as well when it comes to pushing the DOJ to pursue deinstitutionalisation and more community-based services for people with disabilities. This is often framed as something ‘too expensive‘ for states to afford, which is I guess a nice way of saying ‘your life just isn’t worth that much to us.’
For people struggling to stay out of institutions and stay in the community, for people in the community without adequate care who are facing the possibility of institutionalisation because they don’t have options, and for people in institutions who want out, legal cases like this recent one in Georgia are huge. Potentially even life and death. It’s particularly galling that many states cling to the ‘too expensive’ cloak when organisations like ADAPT have documented that community based services are actually less costly; yes, it’s actually more expensive to force people into institutions than to let them live in their communities and provide them with appropriate assistance.
The agreement focuses on moving people with developmental disabilities out of institutions into community settings, where they can be closer to their community and family. There are 1,800 people in state mental hospitals, 711 of whom have developmental disabilities, which are genetic disorders that cause cerebral palsy, autism, Down syndrome. Under the agreement, the state will stop admitting people whose primary diagnosis is developmental disability into state hospitals by July 2011, and instead place them directly into community services.
Gov. Sonny Perdue said in a statement, “I am confident that we finally have an agreement that moves us towards our common goals of recovery and independence for people with mental illness and developmental disabilities.” (source)
Another important aspect of this agreement involves providing interventions to people at risk of institutionalisation, preferably before they reach the point of needing it. This is key; it’s not enough to simply change the way people are processed when they start interacting with the system, but to identify community-based needs and fill them before those people end up needing emergency care. Early diagnosis and supportive care is an important part of a programme designed to limit institutionalisation, by keeping people out of institutions in the first place.
This case was filed in part to respond to a series of revelations about horrific abuses in Georgia’s institutions, with The Atlanta Journal-Constitution playing a key role in the unmasking of systemic abuse and other problems. What this case represents, in addition to victory for people with disabilities, is also a victory for the free press. The paper’s decision to cover this issue led directly to more public attention and an outcry, and that resulted in positive change for disabled Georgia residents.
Too often, people with disabilities are covered indifferently in the news or set up as figures of tragedy rather than human beings with their own lives and autonomy and needs. It’s very rare to see one article discussing abuse of people in institutions, let alone to see a series of articles, including investigative journalism, delving deep into this issue and presenting information to members of the public.
I wish that more papers around the United States and in other regions of the world were doing this, because too often I encounter the attitude that institutionalisation should be considered the first option, and that ‘those people’ (you know the ones) would just be better off in institutions. People are routinely shocked when I provide statistics about abuse in institutions, and they shouldn’t be. The fact that they are is indicative of the paucity of coverage disability issues receive in the media.