Three Articles, Three Kinds of Advocacy

This past month, I published three articles on issues in disability policy. Looking back on them, I’m struck by how (by no particular plan) they reflect a very interesting breakdown of the different kinds of disability rights advocacy.

I.

On December 9th, I wrote a piece for the Los Angeles Daily News on California’s crisis in inadequate funding for developmental disability services:

While the regional center system is admirable, California’s extraordinarily poor funding of it is not. For the last several years, it has become increasingly clear that a crisis exists in California’s developmental disability system, driven by low rates of provider reimbursement combined with a rapidly increasing cost of living. California’s rates are significantly below that of other large and western states, with the disparity between provider reimbursement rates and cost of living particularly drastic in the state’s major urban metropolitan centers. A review conducted by the National Association of State Directors of Developmental Disability Services found that ratios of service coordinators to people served ranked among the worst in the country. Advocates have been calling for additional investment — and now the state has an opportunity to heed their call.

This kind of work – lobbying for increased funding – is at once my favorite and also the most boring type of disability advocacy. Basically, it consists of getting as many people as possible to loudly nudge policymakers at around the same time. To some degree, crafting effective arguments and talking points about why funding increases are important for this particular category at this particular moment matters, but not anywhere near as much as capacity for organized loudness.

On the other hand, this is also the kind of advocacy that is the most unifying. Virtually every kind of disability advocate is welcome, because we all have a shared interest in securing more public funding for our drastically under-funded service system. Even if you believe (as I do), that certain types of services are inappropriate, harmful and should be phased out as soon as possible, the money to be saved from such measures is not sufficient to cover the gap between need and availability in high quality services.

Matt Carey of Left Brain/Right Brain, who shares my distaste for the anti-vaccine contingent in autism politics, expressed frustration that autism organizations who had turned out hundreds of protestors against California’s new school vaccination law were no-shows to the December 10th rally in Sacramento to increase funding for the state’s developmental disability services. I share his frustration. The amazing thing is, we actually mean it.

We would be absolutely thrilled if they did decide to show up in the future. These are groups who spend a good 90% of their energies advocating things that are morally abhorrent to our values – some of which have a habit of attacking my friends and I in very personal ways. But when it comes to fighting for funding for the systems we both depend on, our outlook is “Welcome aboard! The more the merrier!”

And this is as it should be. So long as we can all maintain a commitment to not trying to co-opt these kinds of events (something anti-vaxxers struggle with, to say the least), there is value in having neutral ground where we can all come together to support the public funding that makes arguing about what kinds of services and how they should be delivered possible. This can be somewhat hard to maintain at times: when I spoke at the Sacramento rally, I had to make sure to focus my comments on why the service system needed more money, not focusing on the parts of it, like sheltered workshops and group homes, that on balance could use less.

But if all parties can maintain that mutual respect, we can leverage our political strength far more effectively than otherwise. When we come together to ask the State for more money, I promise not to bash Autism Speaks on the steps of the Capitol building if you promise not to talk about the autism epidemic coming to steal our children in the dead of the night. We may then return to our regularly scheduled trench warfare. This is also as it should be.

II.

After the horrifying shooting in San Bernardino and statements from Speaker Paul Ryan and other Republican politicians that they intended to leverage it to try and pass Rep. Tim Murphy’s atrocious mental health legislation, I wrote a piece for the Guardian opposing the Murphy legislation and highlighting the appalling hypocrisy of politicians who blame mass shootings on people with psychiatric disabilities while cutting the Medicaid funding that supports mental health services:

While Speaker Ryan’s purported concern over the mental health of Americans is touching, it becomes somewhat disingenuous when one takes note of his proposals to drastically slash Medicaid funding – the single largest financing stream for mental health services in the United States. The Senate sponsor of the Murphy legislation, Senator Bill Cassidy, is also on record proposing significant cuts to Medicaid expenditures. Both stances call into question the degree to which improving America’s mental health services infrastructure is truly a priority.

Politicians who propose Medicaid cuts while arguing that the Murphy legislation is the solution to our gun violence problem seem to believe that the problem with mental health in America today is a lack of coercion, not a lack of funding. Their proposed policy recommendations suggest that they believe that we can cut funding and improve services, simply by depriving Americans with psychiatric disabilities of their right to decide how they receive care and who gets to know about it. This is an astonishing assessment; the only benefit of proposing such policies is the ability of politicians to be seen taking action without angering the powerful firearms lobby.

The main point of this article was to push back against the Murphy legislation, which would expand forced treatment while drastically reducing the HIPAA privacy rights of people with psychiatric disabilities and the ability of the Protection and Advocacy rights protection programs to represent them effectively. Since Speaker Ryan had announced his intent to try and move the bill as his main legislative response to the San Bernardino shooting, the political dynamics surrounding it were also very relevant.

This kind of advocacy – about how services and public funding should be structured – is very different from the first kind of advocacy. For one thing, it’s far more contentious. It usually involves pushing for change that threatens the established interests of existing provider agencies or that challenges ingrained assumptions about the capabilities of people with disabilities held by family members and professionals.

It can involve acrimony and anger, with groups and individuals who may stand side by side on funding issues suddenly working at cross-purposes. It drives policymakers absolutely bonkers, since they generally don’t know which disability group they should consider empowered to “speak on behalf of the community”. This kind of advocacy is controversial, confusing and often painful. It is also absolutely vital for the healthy evolution of disability services.

Contrary to those who see the sky falling in every drop of rain, internal political fights over disability policy are not new to the disability community. In the 1970s and ‘80s, for example, groups like TASH and the Arc fought pitched state-by-state battles with VOR and other pro-institutionalization advocates. Our modern system of community services and the growing number of states that have closed all of their large, state-run institutions for people with developmental disabilities is a direct result of that fight. If disability rights advocates were unwilling to court controversy by fighting with other disability groups, there could not be a disability rights movement.

On my last day on the National Council on Disability, I and a few other advocates spent about a half hour talking with Rep. Tim Murphy about his legislation. (Funny story: We ran into him while in a congressional office’s waiting room. Thanks to my prosopagnosia, I only figured out who I was talking to about five minutes after the conversation started. Not my finest moment.)

Leaving that discussion, we were convinced of two things: first, that the Murphy legislation was as ill-advised and pernicious as ever, and second, that Rep. Murphy was sincere in his rhetoric as to why he was introducing it. Like many psychiatrists (his professional background), Murphy actually believes that the problem with the mental health service system in the United States is that patients have too many rights and too much ability to refuse treatment. While he may be taking advantage of the public fear around mass shootings, he is doing so to advance policies he sincerely and honestly believes in.

Recognizing this is important, in my opinion. Not because I think it makes Murphy’s bill any less of a disaster to mental health policy, but because it should remind us that one does not need to wait for a mustachioed villain maniacally cackling over their evil ways to find an enemy worth fighting. Many of the people promoting the most horrifying, dehumanizing, dangerous things for people with disabilities are sincere, well-intentioned and nonetheless horribly, tragically wrong.

III.

Yesterday, I wrote for the Guardian again (they have great editors) about the London Sperm Bank’s policy of refusing donations from autistic donors and those with other neurological disabilities:

Reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.

Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”….

Disability has always been contextual. Many individuals who are today diagnosed with learning difficulties or intellectual disabilities would not have been considered such in a society before universal literacy, for example. Tomorrow’s social and technological progress may lead to still new disabilities. demonstrating that the quest to eliminate disability will always be a moving target. Such changes may leave humanity less equal, less diverse, and perhaps even less human.

This is a very different kind of advocacy than the previous two. It isn’t about what level of funding disability will receive or what kinds of services people will get. In this particular case, it’s about what kind of people will be allowed to exist – but that isn’t the only thing that fits into the broader category it belongs to.

On the Council, we referred to this as “looking around the corner” work, enabling us to prepare for ways in which broader societal changes might impact people with disabilities. Within it, we included things like making sure that self-driving cars were accessible, that evacuation efforts after natural disasters included people with disabilities, or that wellness promotion initiatives in workplaces did not result in discrimination.

Sometimes “looking around the corner” topics became such a present issue that that name wasn’t really a good fit anymore, as in the case of physician assisted suicide or accessibility of ride-sharing apps. But in a broader sense, this advocacy is about how society at large will approach disability and disabled people within the context of technological innovations and other new developments that are not exclusively about us, yet nonetheless impact us a great deal.

It is hard to do this kind of advocacy, in large part because it brings us into contact with forces well outside the disability world. The truth is that while institutional inertia and state fiscal woes limit the availability of public resources, there aren’t usually strong lobbying efforts opposing disability services funding. That doesn’t mean it is easy to get – but there isn’t exactly an opposition. And in fights over service quality or type, we know our opponents intimately, often on a first-name basis, as they are our partners in other kinds of advocacy.

When we deal with this third type of advocacy work, we often find ourselves facing opponents (and needing to recruit partners) from outside the disability space. In doing so, it is suddenly all too apparent how small our world is and how comparably weak the disability community is as compared to other stakeholders and social movements.

It is an open secret amongst Washington, DC’s disability leadership that we are not really a viable political constituency. We could be – the numbers certainly justify it – but compared to the level of organization, money and mobilization in other minority communities or on the part of major industry groups, we are tiny. Trying to ensure that the needs of people with disabilities will be met on advocacy issues that merit the attention of the big political players is often a humbling experience.

Three articles, three kinds of advocacy. We all engage in different mixtures of the above, but I think this captures the gist of how disability advocacy  can be classified according to type. What kind of advocacy do you engage in? Do you focus on just one of these categories or split your work across two or three? Are there others that I haven’t listed here? Feel free to weigh in in the comments. 🙂

P.S: Even though this is a personal blog, I would be remiss in my role as a non-profit employee if I failed to include the traditional New Year’s Eve fundraising appeal. If you feel like any of these kinds of disability rights work are important, consider donating to support ASAN’s end of year appeal. Any donation you make prior to midnight tonight will be matched by a generous anonymous donor. You can see more about ASAN’s work by checking out our annual report, available here.

5 thoughts on “Three Articles, Three Kinds of Advocacy

  1. Reading something like this makes me feel completely useless but incredibly grateful that people with such skills as yours exists. All I do (as a relatively socially- isolated stay-at -home mum) is sign petitions and share articles on social media and occasionally annoy my sons school by suggesting they be more inclusive by introducing certain measures that they ultimately decline. Actually, I just remembered that our state (Australian) autism organisation wants me to meet with their communications manager and media advisor as an autistic person (I’ve met with their CEO before about concerns on their Facebook page posts) to discuss re. their new strategic plan, which in the CEOs words “refers to our social impact regarding dignity for people on the autism spectrum and taking a human rights perspective”. On that note, do you have any advice or can you recommend in reading to prepare me as an inexperienced lay person?

    Liked by 1 person

  2. Hi Rachel,

    Thanks for your work – what you describe isn’t useless at all, it is very important! The national policy work that ASAN and other organizations do only succeeds when it’s accompanied by local advocacy, like what you’re doing at your son’s school. In terms of preparing for the meeting with the Australian autism organization, a few strategies you may find helpful:

    1) Set a few clear, basic asks that the person you’re meeting with can say yes or no to. Keep them clear, specific enough to know if they are or aren’t being met and few (no more than three). In any meeting with someone with power, they are likely to want to keep things general so as to limit their commitment. Look for opportunities to ask for very specific things that they can and may find it politically feasible to do.

    2) See if you can involve a larger organization or constituency, so that you aren’t only speaking on your own behalf. This may not be possible for this upcoming meeting, but consider getting involved in a group like ASAN’s Australian affiliate (http://www.asan-au.org/) which may be able to strengthen your hand by virtue of you now “representing someone” in a meeting like that.

    3) Bring a written document that you can leave with them – typically a 1-2 page paper with bullet points on what you want and why. This might be different from a document you use to keep track of your own thoughts, which you may not want to share with the person you’re meeting with.

    4) Ask when you can do a follow up meeting and follow up via e-mail shortly afterwards, so that there is a clear timeframe for when the person you’re meeting with should be trying to get back to you on your asks.

    We created a resource to help new self-advocates with preparing for these kinds of meetings as part of ASAN’s Pacific Alliance project. Check it out here: http://pacific-alliance.org/wp-content/uploads/2014/04/GettingWhatYouCameFor.pdf

    Keep up the good work! 🙂

    Liked by 1 person

    1. Hi Ari,
      I’ve been wanting to let you know how valuable your advice was for some time now. Finally, now that it is announced I can let you know. I have been appointed a Boatd Director of AMAZE http://www.amaze.org.au/2016/05/walking-our-talk-welcoming-three-new-board-and-committee-members/
      I prepared a document for the meeting I mentioned to you (that was longer than you recommended but contained dot points – 3 for AMAZE generally and 5 points for the media/ communications people. I expanded on each of the points using writings of other autistic people on the topic (and fully credited their work). They told me (on a second meeting) that they liked it so much that they forwarded the document to all their staff and it was well received and asked if I was interested in being involved in AMAZE in some capacity. I thought initially it was for a committee position but they offered me a board position.
      AMAZE has been very keen and supportive and I am hoping to provide a good voice for autistic people for AMAZE 😊

      Liked by 1 person

  3. I’m not sure if/how it fits into one of the frameworks above, but I tend to do a lot of what I call “change from within.” I’m a multiply disabled and autistic health care professional. I do a lot of informal (and sometimes formal) work trying to improve the care people with disabilities get from the healthcare system. Sometimes this means explaining the difference between ASAN and Autism Speaks to a bunch of “autism professionals.” Sometimes this means asking why there aren’t people with disabilities on the board of trustees of an organization for children with disabilities, and then explaining why parents of children with disabilities can have a helpful perspective but can’t be used as a substitute perspective. Sometimes this means giving talks about the social model of disabilities and the discriminatory attitudes held by many health care professionals. Sometimes it just means writing a report on a patient and refusing to use the language standard in my field if it is disrespectful.

    It’s very slow, and means working within the establishment at times when one’s sympathies are often with the radicals. It’s sometimes hard to measure progress which is less concrete than getting specific funding or getting a specific law passed or not passed. But over time, I have seen it make a subtle difference in the attitudes of people with whom I’ve worked, or gotten feedback down the road from those who heard me speak. And so I think of it as advocacy also.

    Liked by 2 people

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