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A disability services funding wishlist

Chally

Here in the state of New South Wales, Australia, we have an election coming up on 26 March, so help us all. The head of the state government, Premier Kristina Keneally of the Australian Labor Party, has pledged $30 million in disability services funding. She’s not going to be re-elected – I’ve never known an Australian government to be so widely despised – so it’s more of an exercise to maintain the last dregs of the public’s goodwill than anything. (If you’re wondering, her government has been plagued by so many scandals, ministerial resignations and schemes that fell through that it would be tempting to get out the popcorn and laugh were it not so serious.)

This is reminding me a bit of the federal election campaign last year, during which we had what I like to call “disability week”. Prime Minister Julia Gillard of Labor and Opposition Leader Tony Abbott of the Coalition both mysteriously started to promise money to disability services, after a few days of which the issue dropped off the radar again. It was all great and feel-good, but not much has actually been happening for disabled Australians. I’m a bit reluctant to take Australian politicians at their word about this sort of thing, having been around during the years in which John Howard (George W. Bush’s friend, remember him?) was Prime Minister and funding for services used by disabled schoolchildren was drastically cut. This was at heartbreaking expense to people I care about, and for the development of programs helping those kids engage with such frivolities as “learning to read” and “adding and subtracting”. Who ever would want to use those skills?

Yeah, I’m bitter.

If you had millions of dollars to put towards disability services in a given part of the world, what would you do with them? Here are some of the uses to which I’d like more funding directed where I live. I have a hard time imagining that these are the uses to which Keneally’s funding – which, as I’ve noted, won’t materialise anyway – would be directed, but a lady can dream. Hopefully the forthcoming Premier, Barry O’Farrell of the opposition, will step up.

1. Proper care: I wish that everyone in need would have access to proper care, and that there were strict measures in place so that disabled people wouldn’t be subject to abuse, neglect, and assault at the hands of those working in the care sector. That should not be happening, and it definitely shouldn’t be covered up by the system.

2. Fair treatment of disabled people in the criminal justice system: The existence of disabled people in Australian prisons has been largely ignored until recent years, with a lot of damage as a result. The conflation of disability and criminality and difficulties navigating the legal system while disabled are cherries on top of the lack-of-adequate-care pie. I’ve just written a piece on this subject for Global Comment, as a matter of fact.

3. Violence against women: I’d like some attention paid to domestic violence against disabled women and girls in particular. In spite of this being a population particularly subject to domestic violence, there aren’t a whole lot of accessible shelters, nor do government campaigns against violence against women discuss how disabled women and girls are affected. There is barely any data available on sexual violence against women and girls with disabilities, even though we know that the rates must be heinous. I can only find one report examining this, and that’s a 2008 report from the Australian Centre for the Study of Sexual Assault. It blows my mind that this extremely vulnerable group of women are largely ignored by so-called feminist or women’s groups, and that governments just don’t seem to care.

4. Education: Well, we know how I feel about this. There isn’t enough funding for teachers and aides. Disabled students are denied access to private schools. Australian policy on tackling literacy and numeracy issues has changed enough times in the past ten years to make one’s head spin. And if there’s anything worse than a bad educational program or policy, it’s an inconsistent one that doesn’t allow anyone to learn anything before it changes all around again. It’s ludicrously bad. I’d like a thorough inquiry as to the state of education for disabled students, and I’d like the government to take the results on board and address the issues. (Unlike that time in 2005 where there was a decent report into literacy, the resultant plans from which were scrapped after we got a new federal Education Minister. I’m bitter. Really, really bitter.)

What would you add?

In the mean time, there’s some good news: it looks like, after years of pushing, Australia’s disability support scheme is getting closer to a complete overhaul. Let’s hope!

16 thoughts on A disability services funding wishlist

  1. I would add “Use of the money to further public education about disabilities”. Money could be spent on commercials or specials on what it’s really like to have a disability, especially the invisible ones that people often overlook.

  2. In the U.S. public teachers and aides are woefully underpaid — quality aides in particular are so badly needed but often can’t stick with the job because they are so, so underpaid. I would argue for better pay for teachers and aides to maintain a stable and good quality level of service for people with and (selfishly, because of my background) especially children with disabilities.

  3. I would like to see more doctors and funding to treat people. Many people with disabilities are living in the streets because there is no treatment for them, and with a regular doctor, they might be able to live a normal life. (I guess I’m thinking mostly of mental health disabilities).

  4. Hm. Offhand, maybe:

    – A free or super low-cost pre-prepared dinner, food & grocery delivery service
    – A buddy service – not the usual pairing of PWD (people w/ disabilities) with TAB (temporarily able-bodied), but with PWD and PWD
    – Super accessible software – which may come in many forms; paper, phone calls, website, personal visits, a combination therein (depending on what medium of “software” works best for the individual) – to help manage & keep track of money, food, medication, appointments…basically so that juggling isn’t so hard
    – A free community PSW / aide training service, so that people especially in very poor communities can learn basic PSW skills to help each other
    – Some sort of care program for people who became disabled because of military violence (such as landmines) or environmental disaster (such as Bhopal), including prevention and sanctions for corporations and governments
    – Funding for disability care & justice initiatives by/for indigenous communities worldwide
    – Intergenerational events co-created by youth and elderly PWD

    That said, it’s hard for me to wrap my mind around your question in a more “big picture” way, because the nature of funding is so messed up and the hand that gives you funding is also the hand that demands you demonstrate how your use of the funding supports the hand, and so much of disability justice is not about joining the other fingers on the hand but rather doing away with the hand entirely. Not to mention the usual crap about how funding goes to organizations which usually aren’t PWD-led. Which certainly isn’t to say that funding is bad or whatever, but that it’s complicated. There are a lot of disability needs that are hard or impossible to meet if other shit stays the way it is (like capitalism, like transphobia, like anti-immigration, like etc), but mobilizing for anti-capitalism alone certainly doesn’t mean disability justice will magically follow…gah. So maybe another item on my wishlist is:

    – revolution

    But I’m not sure whether that’s gonna be funded. 🙂 And by revolution I’m not sure what I mean. So maybe a more realistic item for my wishlist would be:

    – Funding prioritizes PWD-led initiatives, and the questions of who gets funding and which initiatives are successful or valuable is answered by diverse PWD using their own measuring sticks

  5. I’d echo Sophie on public education – so many TAB people just have no idea what it’s like to live with a disability, and don’t bother to self-educate (or don’t care about it enough to do so). I think making sure more people were informed and aware – as much as we can taking an individual’s resistance/reluctance to listen into account – would likely lead to a lot of other improvements. Once people “get it”, to whatever degree they can, then improvements in public policy and such would likely follow, because politicians (well…some of them) and voters would hopefully be less dismissive and uncaring.

    Although…I feel naive thinking that 🙁 And then I feel depressed.

  6. So this is deeply tied to my own experiences of disability and there are a lot of privileges that go into my reasoning but…

    1) Legal representation, starting as early as they start school. I was lucky enough to have a good lawyer at the right time and was able to force my local school system, against it’s will, to back off of it’s harassment and give me the services to which I was legally entitled. Most aren’t so lucky, many don’t even know it would be possible even if they had the resources. A lot (not nearly all) of what PWDs face could be lessened if we had access to the lawyers that make casual oppressors panic.

    2) Early education of PWDs about their rights. If I wasn’t the son of a woman who made her living being a hardass in negotiations I wouldn’t have known what my rights were, I wouldn’t have noticed how fucked up things were how early, I wouldn’t have had the attitude that has tagged me as More Trouble Than Its Worth So Just Do What You Have To So They Shut Up And Leave. Education of PWDs early on with a focus towards letting them value themselves and break the whole “you’re a burden” message we get from at least the time we acquire language could go a long way to letting us take full advantage of legal representation.

    Take those two things and other services will follow.

  7. Outings. I’ve been a case manager, caregiver, and resident aid in homes, in institutions, and at outpatient facilities, and so many of my clients never go anywhere. They never do anything. They have no vacations. They have no holidays. They have no weekends, or visits. They don’t go to the store, they don’t go for walks. They don’t play in the snow or sun themselves at the beach.

    More than anything else, I would love to see fundings for people with disabilities to get OUT, and GO places. To live and be a part of the society they exist in.

  8. karak – is there any way for volunteers to provide outings for PWD?

    *is clueless and naive, but randomly helpful*

  9. Public. Transportation. Everywhere.

    No suburban wastelands where you can only get around with a car because otherwise “those kind” of people who can’t afford a car might come shop at your stores. No stigma attached to public transportation. So many trains and subways and light rails and L’s and express buses and trolleys that you never have to wait more than five or ten minutes for one. Bathrooms in subway and other public transit stations.

    Public transportation that runs all night so blind guys who were out drinking with friends and end up being terrorized into fleeing their drunk friends don’t have to turn themselves over to the cops and the drunk tank so they can have a place to stay until the public transportation opens in the morning, or so women don’t have to stay over the home of drunk friends who have become unsafe because they themselves are too inebriated to drive home and there’s no public. Public transportation that runs everywhere so blind people and people with seizure disorders and elderly people who lack the reaction time to safely drive have the same total freedom of movement I do as a driver. Public transportation with nice big racks to stash your groceries on the way home. Public transportation that uses modern computer technology to optimize routes so that no one has to change buses three times and take two hours to get to the grocery store.

    On top of that, I would add: computer assisted driving. For the fully blind, this would not be helpful, but for people like my husband who are legally blind, for elderly people who are losing their vision or their reaction time, for people with narcolepsy or epilepsy, a car that can drive itself short distances without assistance (ie, can pull over if the driver falls asleep at the wheel) and has big heads-up displays to assist visually impaired drivers would be AWESOME. I beat the drum of public transportation all the time because it’s cleaner, safer, less wasteful of energy, and less congested than roads full of cars, but I love my car and I know cars are not going away, so: computer assisted driving. On top of tons of public transportation.

    Oh, and make it a felony to deny anyone their legal medication, ever, for any reason. Including schoolkids. Including prisoners. It ought to be considered assault.

    The disabilities I’m primarily familiar with are the ones that keep you from driving — my husband is legally blind and not permitted to drive, my mother suffered from low blood pressure and sugar until she got diabetes and high blood pressure and both ways, she faints a lot and doesn’t feel safe driving — so that one is huge for me. (And from a feminist perspective, when I think of all the times I could have killed myself on the road because I drove when I was so exhausted I was as bad as a drunk driver, due to the fact that there is nowhere safe for a woman to pull off the road and sleep in her car, public transportation that runs all night and is actually SAFE sounds awesomesauce too, as well as it being great for people who can’t afford cars… but from a disability perspective, I think the lack of ability to drive is one of the most hurtful and damaging problems disabled people face, because it traps them and makes them dependent on others for rides, and it just doesn’t have to be that way. Public frickin’ transportation, people.)

  10. A lot of really great ideas have been mentioned here already. I would add something about employment, because so many PWDs are un- or under-employed. I’d like to see services that match PWD into jobs *which actually fit,* ensure that proper accommodations are in place, that the person can actually get to the job, etc. And I’d like to see greater flexibility about what it means to work. For some working from home or working part-time (for any number of hours) may be the best option, and that should be facilitated by service providers. In the U.S., at least, I’ve heard so many horror stories of vocational rehab service providers who do not do a good job matching individuals to work.

  11. These are great ideas. I would add a minimum level of income not tied to whether or what kind of employment a disabled person undertakes. It would be helpful if govenments recognized that people can have fluctuating capacity and those fluctuations should not impact their status.

  12. Mezzanine–

    Maybe. That would be a fantastic idea. I do see some issues–like volunteers not being bound by HIPPA, or needing extensive background requirements–but for some of my clients, a nice person stopping by once a month for an outing would be a godsend, and someone who could take a client on an overnight stay would be a miracle.

  13. I would like funding, any funding, don’t care who from, to make student run university support services actually accessible. Currently the Sydney University Student Representative Council (which provides independent student advocacy and case workers) as well as the Women’s and Queer spaces are all woefully inaccessible, and it’s well past time for the issue to be fixed. I’m pretty sure other universities have similar issues with some of their services.

    But that’s just my tiny small corner of what’s been frustrating me this week and thus not at all big picture. harrumph.

  14. A lot of good ideas here. From my perspective as a USian and someone who has mental and developmental disabilities and chronic pain (all hidden disabilities), I’m seconding:

    Chally’s item #2. Amplified by the fact that denying trans folk necessary hormones, putting them in the wrong prisons (trans women into men’s prisons, frex) or into solitary confinement will most certainly exacerbate any mental illnesses that we have.

    Kristen J’s Husband @12’s idea of guaranteed minimum income – this would be a g-dsend to me, as I cannot work full time, and the amount that I can work varies literally from day to day.

    Alara @10 – Yes, public transit EVERYWHERE. No-one should have to drive to do the ordinary tasks of living (which in my mind *includes* outings and vacations). And much work needs to be done to make public transit more accomodating to PWD (and as you mention, people loaded down with groceries, etc). I’m also liking your idea of considering denying people their meds as assault, and I’d like to extend that to medical care in general.

    In that vein, the drug war has to STOP. It is racist, it is the cause of at least 3/4ths of the prison population. It impacts people with chronic pain, such as myself, who find it just about impossible to get opioids or weed for pain flares (let me tell you how humiliating it is to go to a university-based pain clinic, only to be told that I’m engaging in “drug-seeking behavior” – of course I am! Because I’m in pain, assholes!); it impacts trans folk as the feds continue to shut down internet pharms that are often the only means we can get our hormones, thanks to the gatekeeping that those same feds enforce on our backs.

    The two US federal disability programs – SSDI and SSI – we cannot have a situation where it takes an average of TWO YEARS of legal wrangling to get benefits. We cannot have regs so complex that most people have to hire legal assistance to duke it out with the feds. We cannot have a situation (with SSI) that requires you spend yourself, and your spouse if you have one, down into abject poverty and keep yourselves poor in order to continue to receive benefits. We cannot have a situation where mental disabilities and chronic pain are belittled by the feds to the extent that PWD with those disabilities find it nearly impossible to get benefits. SSDI and SSI need to be completely revamped, and funding for both needs to be dramatically increased.

  15. I’m a bit distracted right now so don’t have time to think about the issue properly, so the one point I want to raise is very very much about issues I am having right now:

    Chally’s point 1. SO MUCH. I want flexible care packages tailored to the individuals’ needs. I want care available for all sorts of disabilities and all sorts of help. I want care aimed at helping people live how they want to in the communities they want to. I want the gap where you are disabled enough to need help but not disabled enough to actually qualify for help GONE. (I’d also like applying for care to be less of a tangled mess of bureaucracy that requires years and probably lawyers to sort through.)

    I currently really want care in the form of someone coming in once or twice a week to help make sure I am doing okay, not drowning in sacks of rubbish, not drowning in dirty dishes, eating, sleeping, have clean clothes, have clean sheets, etc. and help me tidy and clean because these are things I have real trouble doing myself and that eat my spoons liekwhoa and cause genuine problems in my life. I’d even be very happy to pay (insomuch as I can afford it) for this service. But I can’t find anything commercially – cleaning services come closest but that’s not quite it – and when it comes to social care I’m looking into it but I’m pretty sure I’m “not disabled enough” (and because of the mess of bureaucracy everything is just looking into it to see if I qualify will probably eat spoons like nothing else.)

  16. @Kaz–

    I’m sure you know this already, but on the rare off-chance you don’t, have you contacted your local Department of Rehabilitative Services? You might be eligible for a DORS worker. I know you’re almost guaranteed eligible if you’re receiving social security/disability.

    This only applies if your USian though.

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