23 January 2016

Creating Change is not exempt from casual ableism

Creating Change is not exempt from casual ableism.

Right now, thousands of queer and trans folks are gathered in Chicago for the annual Creating Change Conference. I'm not there, mostly for financial inaccessibility reasons but there's also no shortage of disability inaccessibility reasons.

 Photo: Me keynoting the Students of Color Conference "From Moments to Movements" in Yakima, Washington, April 2015. There are a lot of attendees visible in the unfortunately grainy photo facing the front podium. Over 800 students gathered for SOCC. This picture was unfortunately the only "conference" picture I have in my collection that doesn't show mostly a collection of white people.

The conference program booklet contains over three pages asking its attendees to show basic respect for disabled attendees -- to not use flash photography, to avoid asking unnecessarily intrusive questions, to refrain from wearing scents/fragrances, to give people extra space and time to communicate, to avoid making assumptions about things like not making eye contact, to not touch or talk to service animals, to hold open inaccessible doors. From the section on resources for disabled attendees directly -- noting where to find large print programs, wheelchairs and scooters, assistive listening devices, or ASL interpreters -- you might assume that they've made a shitton of progress from the usual shitty standard to be expected at most conferences period (but especially conferences not specifically about disability).

The fact that there are several sessions on disability inclusion as well as developing a disability justice analysis in liberation work, not to mention an actual Disability Caucus (that's tonight), certainly makes it seem like we should be able to expect a pretty good degree of disability consciousness and a willingness to enforce the actual expectations around not being an ableist dickbag.

But then this happened -- an attendee with fibromyalgia (not always an apparent disability) had a series of terrible experiences in just the last couple days alone.

In their own words, shared with permission:

(begin quote)
I understand the wonderful side of Creating Change, that it can be empowering and great. But as a disabled person with different needs I have never felt so marginalized by a conference and the people attending. Most of you know I have some issues with my hips and legs so I bought a cane. After several attempts to get into a elevator (because I don't move fast everyone was cutting me in line and rushing past me) I finally got in one and my cane and I were literally pushed out of that elevator by a group of people probably my own age, because "they were in a hurry."  
Yesterday I attended a workshop specifically for disabled folks and the room wasn't accommodating AT ALL. People with mobility devices were separated from people in chairs because of the space and despite several requests the conference wouldn't provide extra chairs or a microphone. People were having to get down on the floor and sit because they weren't able to stand and they wouldn't provide chairs.  
Every experience I have had here has been a slap in the face to differently abled or chronically ill folks. Instead of feeling empowered in my body and queerness I feel like there is no place here for me and that CC doesn't actually care about folks that have different needs. This experience has made me the most self conscious I have ever felt about my body and the things it does and needs. It makes me sad. 
(end quote)

This kind of bullshit demonstrates the casual ableism endemic to all kinds of conference spaces.

It doesn't matter if the conference is focused on disability. Autistic activist Kassiane Sibley has been repeatedly assaulted with life-threatening seizure triggers at multiple disability-specific conferences, but that's been apparently insufficient to warrant changes in policies or enforcement of them. My partner has been subjected to extremely painful audio feedback from microphones during conferences where plenty of people should have known better. I've been at conferences ostensibly for people with intellectual disabilities where the material ranged from totally cognitively inaccessible to outright patronizing and condescending, because "presume competence" is apparently little more than a buzzword. Other friends who use wheelchairs have been literally unable to get into the room at their conferences -- at times unable to even get onto the podium to speak when they were invited, because there wasn't a ramp provided.

This doesn't even begin to touch on the fact that a ridiculous number of disabled activists and advocates are unable to attend the Society for Disability Studies conference (and many others) every year because it's always financially out of reach -- and a disproportionate number of disabled people are no-income or low-income, even those of us with piles of educational privilege.

It doesn't matter how much money the hosting institution has. I've been told by a university with an endowment of over $1 billion that paying for American Sign Language interpretation for an event advertised to the public would be a waste of money.

It doesn't matter how supposedly progressive, forward-thinking, or inclusive the conference is supposed to be. I can't go anywhere without hearing fellow people of color condemn racist police as "suffering from a mental illness" or fellow progressives insist that focusing on mental health is the way to go in addressing violence or fellow feminists argue that people with uteruses need legal protection for the right to choose so they can abort pregnancies with potentially defective or disabled fetuses.

Gentrification and lack of housing also means disabled people who need the few accessible units are totally fucked, especially if they're also low-income, which frankly, we're much more likely to be on average. Blank stares.

The prison-industrial complex depends on ableism as much as on white supremacy, and in fact, creates new disability experiences by traumatizing and physically abusing prisoners. Blank stares.

Dominant narratives about whose bodies are valuable or desirable or worthy of love focus not only on whether you're thin or heterosexual or cisgender or young(er) but also assume that you're able-bodied, sighted, hearing, physically stable, and neurotypical. Blank stares.

Fair pay has to mean not only a $15 minimum wage, an end to the exploitation of prisoners paid at subminimum wage rates, and hour/overtime protections for low-wage workers, but also an end to the subminimum wages under Section 14(c) for disabled workers. Blank stares.

If you don't get that "your issues" are also disability issues, how are we supposed to expect even a modicum of space for us at your conferences?

Soul-crushing schedules jam packed with workshops and breakouts and plenaries and caucuses and special interest groups and socials and receptions with barely any breaks in between mean that most of us have to say no. They mean that we have to choose between attending the People of Color Caucus and the Trans/Gender Non-Conforming Caucus. Or between attending several breakout sessions and the open social hour that evening. Because our bodies, our brains, our mental health just can't take it. Because the spoons dry up partway through the first day. Because there isn't enough time built in to have actually nothing scheduled.

(Scheduling meetings during lunch doesn't count. That means we have to choose between taking the break we need and forcing ourselves to keep "performing" if we want to be able to participate, if that's when the only option for participation is.)

Expensive hotels, far-away cities, few opportunities for scholarships or financial aid (and often limited financial aid to cover only cost of registration but not travel costs), and steep registration fees that mean most of us have to resort to crowd-funding and begging everyone we know for help getting there, if we're even able to fight through the enormous amount of classist shame attached to asking for money. And of course, that assumes we're not already in desperate need of money for our own basic survival in the first place.

Your queer and trans disabled folks have always been here, creating change in how we do things. In how we do intimacy. In how we do sex. In how we do kinship. In how we do organizing. In how we do social. In how we do community building.

But in your spaces, what we do suddenly turns into too much. It's cool to say you're accessible, shows you're hip and aware of the "next latest thing," but actually practicing it? Actually training your volunteers and staff on how to recognize casual ableism and intervene, especially when it comes to how your conference is being run? Actually addressing issues when they arise? Actually responding to people's access needs when they become relevant? No, sorry, it's not convenient.

Don't bother putting the accessibility notice in your program if you're going to ignore it. Don't bother putting the accessibility notice in your program if you're not going to act on it. I don't believe in words and vague promises and commitments. I believe in actions. I believe in what people do (or don't, frankly), and if all it is is window dressing, I'd rather you be honest in the first place and not include it if you're not going to follow through on it.

If you want to be radically inclusive, if you want to be maximally accessible, if you want to be safer, if you want to create multiple modes of participation, then don't just say you're going to do it. Don't just provide the large print programs and a nice request to please not wear scents or use flash, and then step back and wait for the inevitable fuckery, and then insist that it's all okay and you're still accessible anyway. Create accessibility by practicing your stated commitments and being, oh, I don't know, proactive about it. (This "let's only deal with it after we get a complaint" reactive bullshit needs to stop too.) No more excuses. No more, "but we tried our best." No more, "but it's too hard." No more, "but you're too angry."

We're angry because this is a constant occurrence. Literally everywhere, we are reminded that our bodies and brains don't matter and are not valued. But we keep trying, keep pushing to be part of these spaces because we believe in the power of interconnectedness, of intersectionality, of coalition building, of insisting that our communities recognize our existence in all its complexities, of moving from margin to center, of making sure that the next disabled folks after us have a bit less bullshit to put up with. But so far, things aren't changing much more than on the surface. And while that's a little sad, somewhat enraging, and not more than a little disappointing, it's far, far from surprising.

(If conferences on disability consistently fail on accessibility by all definitions of the word, then how the hell are we supposed to expect anyone else to get it right? But of course, the problem is that we should be able to expect better. Especially when you claim you're committed to accessibility.)

I'm not in Chicago right now, and I'm only sad about that because that means I can't be with my fellow sick and disabled queer and trans folk who are there right now putting up with this ableist bullshit.

See you in the struggle.



Further Reading:



05 January 2016

You want real change to stop gun violence?


Content/TW: Liberal profanity (including many f-words), gun violence, institutions, police violence, racism, ableism. 

Photo: Hand-drawn cartoon of a hand holding a gun, and another person's hand putting the index finger down the barrel of the gun.


You want real change to stop gun violence? 

Stop throwing people of color and psych disabled people under the fucking bus.

I received an email yesterday from President Obama's White House Office of Public Engagement outlining his new set of executive orders (to be announced in full later today, along with the parent of one of the children killed in the Sandy Hook elementary school shooting in Newtown, Connecticut) on stopping gun violence. 

The email notes the following orders (necessary context, and you're welcome, to everyone wondering what the orders say since they haven't been totally public yet as of time of posting): 

[long quote begin]

Ensure States are providing records to the background check system, and work cooperatively with jurisdictions to improve reporting.   Congress has prohibited specific categories of people from buying guns—from convicted felons to users of illegal drugs to individuals convicted of misdemeanor crimes of domestic violence. 
 ... 
The Administration is committed to improving care for Americans experiencing mental health issues.  In the last seven years, our country has made extraordinary progress in expanding mental health coverage for millions of Americans.  This includes the Affordable Care Act’s end to insurance company discrimination based on pre-existing conditions, required coverage of mental health and substance use disorder services in the individual and small group markets, and an expansion of mental health and substance use disorder parity policies, all of which are estimated to help more than 60 million Americans.  About 13.5 million more Americans have gained Medicaid coverage since October 2013, significantly improving access to mental health care.  And thanks to more than $100 million in funding from the Affordable Care Act, community health centers have expanded behavioral health services for nearly 900,000 people nationwide over the past two years.  We must continue to remove the stigma around mental illness and its treatment—and make sure that these individuals and their families know they are not alone.  While individuals with mental illness are more likely to be victims of violence than perpetrators, incidents of violence continue to highlight a crisis in America’s mental health system.  In addition to helping people get the treatment they need, we must make sure we keep guns out of the hands of those who are prohibited by law from having them.  Today, the Administration is announcing the following steps to help achieve these goals:

Dedicate significant new resources to increase access to mental health care.  Despite our recent significant gains, less than half of children and adults with diagnosable mental health problems receive the treatment they need.  To address this, the Administration is proposing a new $500 million investment to help engage individuals with serious mental illness in care, improve access to care by increasing service capacity and the behavioral health workforce, and ensure that behavioral health care systems work for everyone.  This effort would increase access to mental health services to protect the health of children and communities, prevent suicide, and promote mental health as a top priority.   
Include information from the Social Security Administration in the background check system about beneficiaries who are prohibited from possessing a firearm.   Current law prohibits individuals from buying a gun if, because of a mental health issue, they are either a danger to themselves or others or are unable to manage their own affairs.  The Social Security Administration (SSA) has indicated that it will begin the rulemaking process to ensure that appropriate information in its records is reported to NICS.  The reporting that SSA, in consultation with the Department of Justice, is expected to require will cover appropriate records of the approximately 75,000 people each year who have a documented mental health issue, receive disability benefits, and are unable to manage those benefits because of their mental impairment, or who have been found by a state or federal court to be legally incompetent.  The rulemaking will also provide a mechanism for people to seek relief from the federal prohibition on possessing a firearm for reasons related to mental health.

Remove unnecessary legal barriers preventing States from reporting relevant information to the background check system.  Although States generally report criminal history information to NICS, many continue to report little information about individuals who are prohibited by Federal law from possessing or receiving a gun for specific mental health reasons.  Some State officials raised concerns about whether such reporting would be precluded by the Privacy Rule issued under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Today, the Department of Health and Human Services issued a final rule expressly permitting certain HIPAA covered entities to provide to the NICS limited demographic and other necessary information about these individuals.

[long quote end]

Obama, you need to stop throwing psych disabled people into the sniper's crosshairs of political expediency. Your order urges the public not to add stigma to mental illness and people who have mental health related conditions or psych disabilities, yet its very substance directly contradicts this purported objective. Your order relies on stigma and fear around psychiatric disability, mental illness, madness, and neurodivergence by including this very section, let alone including it as part of your goal to keep guns "out of the wrong hands." 

I'm all for gun control in theory, but here's some cold, hard reality that you clearly need to swallow. 

(1) You can criminalize guns, but look how well that works with drugs. If someone really wants to get their hands on a gun, it won't matter whether they are legally able to obtain the gun or not; they will find a way to obtain the gun themself or through another person. 

(2) Your executive orders and virtually all policy proposals on the topic rely on background checks as the means for controlling gun purchases and ownership, regulating gun possession, and monitoring gun owners. As numerous other people have already discussed at length, background checks rely on arrest and conviction records, which mean that those who will be precluded from gun ownership (as you yourself already noted) are disproportionately Black and Brown people, since that is the demographic most likely to be impacted by the criminal (in)justice system.  

(3) Your executive order announcement here is waffling between emphasizing the importance of your mental health bullshit and apologetically trying to disclaim involvement by resorting to, "Well, we have to keep guns out of the hands of those legally prohibited from owning them by reason of mental illness." So are you doing it because you genuinely believe it's the right thing to do, based on your ableist, sanist prejudices against neurodivergent and psych disabled people, or are you doing it because the law so requires? And if the law so requires, why not consider that sometimes sorry, not sorry, most a ridiculously huge amount of the time, the law is fucking unjust and dependent on the same fucking systems of oppression and their underlying assumptions and values.

(4) Your executive order apologetically mentions that people with mental illness are more likely to be victims than perpetrators, but then goes right on ahead blazing into its scapegoating, business as usual. Stop. 

Some people with mental illness do violent things, including using guns in violent crimes. Plenty of people with absolutely no mental illness whatsoever also do violent things. Putting mental health into this conversation AT ALL is evidence of deeply rooted, ingrained, and thoroughly unexamined ableism. It is irrelevant. 

The relevant thing to be focusing on is actual violence and its actual causes. Not whatever scary scapegoat you want to pin it on so you can avoid critical discussions of the real problems in this country. 

(5) Your executive orders will require various federal agencies to ensure that states' can more easily share private health information about people with psych disabilities by creating specific exemptions to HIPAA. 

(For those who don't know what HIPAA is, it's the law that protects your private health information from the prying minds of anyone who randomly wants to know what STI's or STD's you have, when you've ever been prescribed psychiatric meds, etc. etc. etc. It's the law that makes sure your employers can't discriminate against you based on your health history by protecting your information. It's the law that for many people with psych disabilities, lived experience of mental health conditions, and others who have survived traumas, means that seeking any kind of services, supports, treatments, or therapies can become possible -- precisely because it protects against external judgment steeped in pervasive ableist stigma.)

You can't have it both ways, wanting to improve mental health services and also weaken the HIPAA protections that can prevent many kinds of discrimination, abuse, and exploitation. 

(6) Do we need improvement in mental health care? As a disabled advocate with pretty significant public policy experience, especially at my tender age, abso-fucking-lutely yes. Our system for mental health care service models and delivery is seriously fucked up. And that's the most polite way I can put it. We one hundred percent need better services, better quality services, more accessible services, more multiculturally competent services, more affordable services. Enforcement of the mental health parity law. Strengthening of network adequacy, especially in lower income and rural areas. Significant, vast improvements in services and care available for queer and trans folk. Et cetera. 

But that conversation does not belong in a conversation about gun violence. It is a separate conversation that deserves full time and attention, not to be inserted into this conversation as a placeholder for addressing actual underlying issues of widespread gun violence in this country.

(7) You don't specify what kind of care or services you'll be funding, so, excuse me if I'm skeptical, but I have a hard time believing you mean anything other than coercive, involuntary treatment along the lines of Murphy's proposal.

I keep hearing criminal justice reform advocates talk about how some people need treatment, not jail. Sounds great in theory, but institutions are just medical incarceration.

No thank you to ableist confinement and paternalism in the name of public safety over bodily autonomy and dignity.

If you want a conversation on mental health care, let's talk about disparities in access for rural people, for immigrants. For queer and trans people. For people of color. For other disabled people. Let's talk about the duplicitous nature of group homes with institutional environments. Let's talk about the insidious nature of guardianship -- "civil death." Let's talk about the severe funding shortage for peer services and supports.

Where are those conversations? Please tell me and I'll happily join.

(8) You want to stop gun violence? Demilitarize the fucking police, because it's the police that murder Black, Brown, Indigenous, queer, trans, and disabled people in droves. It's the police that implement policies like broken windows policing and stop and frisk. Where's your real talk on gun violence coming from the police who are in theory supposed to serve and protect? Who are they really protecting? 

Who will your background control really protect? 

(9)  Here are some of the real issues in this country: Unchecked (trans)misogyny. White supremacy. Male entitlement. Toxic masculinity. Quasi-property status of children and youth. The presumptions of caregiver benelovence and disabled incompetence. 

Here's a thought: maybe start addressing these problems, and see if you can stop some gun violence. 

You wanted a conversation on how to #StopGunViolence? Sit down, shut up, and start taking notes.