I’m done. I’m done being polite.* I’m done shutting up about good liberals who seem to get every sort of civil rights and civil liberties except the equality of rights, respect, and dignity of our brothers and sisters with disabilities. I’m done with disability rights as a “when we get around to it” right. I’m done with people who are willing to use respectful terminology except — *big sigh* — avoiding using the word “retard” is just one step too far toward thought control. And I’m done with “civil rights” law firms in inaccessible offices and “civil rights” lawyers who don’t hire interpreters. I’m done.
What pushed me over the edge was this voicemail, from a fellow attorney who would, I believe, describe himself as favoring civil rights. I suppose it’s my one last shred of not-yet-quite-doneness that leads me to keep him anonymous.
But who he thinks he is and who his words and actions show him to be should not be anonymous. It needs to be out there for good liberals — chock full of self-righteousness and non-disabled privilege — to observe and perhaps see themselves. And become real civil rights lawyers by according people with disabilities the same rights and respect you accord other groups you work so hard for.
First let’s play the “protected class switcheroo” game. Imagine I got this voicemail:
Hey Amy, [Name Redacted] here. Trying to get in touch with you and/or Tim. I’m working with a group that is sponsoring legislation to increase penalties for disrespecting police officers. They got bogged down because of some African-American, ah, community concerns – said it would be used as a sword instead of a shield. Um, I think it’s miscommunication. I think the African-American community should be absolutely in favor of it and I wanted to hook up with folks, the right folks, in the African-American community and I thought you would know the behind the scenes politics of who best to contact. . . . .
Pretty gross, eh? No good liberal would talk that way, at least not in public in 2015. This is, in fact, the voicemail I received. Verbatim.
Hey Amy, [Name Redacted] here. Trying to get in touch with you and/or Tim. Um, I’ve done work in the past through when I was at the ACLU with the Hemlock Society; they’re now the Compassion and Choices organization and they sponsored some legislation about right to choose or to refuse treatment. They got bogged down because of some disability, ah, community concerns – said it would be used as a sword instead of a shield. Um, I think it’s miscommunication. I think the disability community should be absolutely in favor of it and I wanted to hook up the Compassionate Choices people with folks, the right folks, in the disability community and I thought you would know the behind the scenes politics of who best to contact. . . . .
And here is my response:
[Name Redacted] –
Thanks for your voicemail. I think I can say with a fair degree of confidence that there was no miscommunication on the disability rights side. The position of CCDC, Not Dead Yet Colorado, and a long list of prominent disability rights groups opposing physician assisted suicide is well thought out and thoroughly researched. I can’t possibly improve on the information on NDYCO’s website, so I’ll provide a link: http://www.notdeadyetcolorado.org/.
To be clear, Colorado’s bill was not about refusing treatment: anyone can do that at any time without the proposed legislation. It is also not about choices: we can all choose to buy a gun and shoot ourselves; to drive in front of a train; to stop eating and drinking; etc. Instead, the discussion revolves around getting a doctor to assist you in killing yourself to avoid — tracking the title of the bill — an undignified death. What is characterized as “lack of dignity,” however, are conditions that many people with disabilities live and thrive with every day: the need for a vent; a feeding tube; colostomy; urostomy; assistance with activities of daily living. Statistics from Oregon, for example, a state that has legalized assisted suicide, demonstrate that people do not chose assisted suicide to relieve intractable pain — the purpose for which it has been sold to the public — but rather to address perceived loss of autonomy, inability to engage in activities of daily living, and loss of dignity.
These perceptions and the urge to kill oneself over them result directly from a society that does not value people with disabilities — and such perceptions are (circularly) reinforced by bills like these and the rhetoric that surround them. Assisted suicide is urged in an environment in which people with disabilities do not have universal access to attendant care in their homes and communities, to assistive technology and mobility devices, to accessible vehicles or modifications, or to home modifications — hell, to accessible homes to start with. These are all things that people need to continue to live — with dignity — in the community. In the absence of this sort of support, many disabilities fit the bill’s definition of “terminal,” making it the worst sort of health care rationing: cheaper dead than disabled.
A bill proposing that it was “undignified” to live as an African-American, an LGBT* person, or — to take an historical example — as a Jew, thereby justifying easy access to death would be rejected with horror. Yet good liberals appear completely at home with providing a cheap and easy path to death for people with disabilities.
Furthermore, the concerns of people with disabilities reflect a great deal of thought and considered analysis; it is patronizing to suggest that they result from miscommunications. I can’t imagine any other group active in the civil rights dialog that would be the subject of a voicemail like this. When LGBT* groups oppose civil rights rollbacks, are they perhaps just victims of a miscommunication, which can be corrected by identifying the “right” groups? How about African-Americans calling for law enforcement reform? Shall we identify the “right” groups to support our men and women in blue?
The debate over physician assisted suicide has been plagued by this sort of condescension, as liberal and radical disability rights groups are accused of being pawns of religious conservatives, as if incapable of independent thought. This infantilizing of our movement underscores our fears that disability is so stigmatized that ostensible civil rights champions would rather be dead than disabled.
Ultimately, if the ACLU is devoted to nondiscriminatory civil liberties, it should support a universal right to assisted suicide. Anyone, anytime, can request a lethal dose, not just those in circumstances defined in terms of a protected classification. This I would support, though I believe other members of the disability rights community are more compassionate than I am.
I would be happy to put you in touch with any of the groups on this list to help with any miscommunications:
- Access & Ability Colorado
- ADAPT Colorado
- Assn of Programs for Rural Independent Living
- Autistic Self Advocacy Network
- The Center for Rights of Parents with Disabilities
- Colorado Cross-Disability Coalition
- Disability Rights Center
- Disability Rights Education and Defense Fund
- Justice For All
- National Council on Disability
- National Council on Independent Living
- National Spinal Cord Injury Association
- Not Dead Yet USA
- Not Dead Yet Colorado
- Patients’ Rights Action Fund
- The World Association of Persons with Disabilities
- The World Institute on Disability
* Yes, I know, there is clear and convincing evidence that I was done with politeness, as a general matter, a long time ago.
Hi Amy, one of our board members just wrote a piece for us named, “Assisted Suicide Argument in the Toilet” in reaction to hearing about how assisted suicide is preferable to “suffering” the indignity of having someone else wipe your butt. When she’s finalized it I’ll send it around. Honestly, I’ve always suspected that this whole “death with dignity” argument is a reaction of white non-disabled middle/upper class privilege.
I think this is exactly right. Fear of having someone assist you to the toilet is closely related to fear of using the wrong fork at dinner.
Linked to this by a friend. I’m autistic and an attorney and entirely approve of your “lack of politesse” … I would have ripped this person a much wider new one over their ridiculous, bigoted word choice. My position on the right to die as a whole is complex as opposed to my position on various bills, but irrespective of belief, the privilege reeks through in that voicemail. Good on you.
Indeed. It took me a couple of days to calm down enough just to write what I wrote, rather than a long string of incoherent invective. The “right” groups??? FFS!
YES !! Politeness is getting us nowhere!
I’d love to know if you got a response back.
Not as of Saturday morning. I’m wondering what if anything I’ll hear back.
“This I would support, though I believe other members of the disability rights community are more compassionate than I am.”, she said with one eyebrow arched, silently daring him to utter one more idiotic syllable.
Thank you for this! I’m from Not Dead Yet UK and we’re all sharing you like mad.
Kindly saying.. race comparisons can stick in the throat, especially given the killings of so many African Americans have been killed by police recently and the clear discrepancy about value of their lives. I can see how carefully you are trying to say it though and comparisons can really help folks.
Yes we haven’t set up killing clinics or anyone else (yet) though info on how many disabled people from specific groups are targeted and die is scant. Eg are we more likely to be in struggles leaving us feeling suicidal if we are from certain other community groups too? I don’t know but I kinda expect yes. Poverty and economic background are a big factor.
Thanks so much for listing all those supporting groups! We have a global campaign against assisted suicide and all writings like yours help so much.
Yes, I get that I’m on thin ice with my switcheroo, but there is a type of liberal who would be so very proud of his support for protesters in Ferguson and NYC, but would not get why PAS is at all problematic. Hoping to poke those folks a bit, even if at some rhetorical risk. BTW, cool to get a comment from the UK!