I am tired of negotiating my humanity to strangers.
Or trusting friends who just don’t understand.
Of trying to fit my body into spaces that do not accommodate me.
Only to be told how difficult I am to those who fit in, just right.
I am tired of accommodations to fads and fashions, to power and privilege but that DISability access is too demanding, or we did that the last time, we can’t do that EVERY time.
I am tired of loving a world that doesn’t love me back.
I am tired of patience and desire.
I am tired of betrayal when an apology would be enough—mine or theirs.
I am tired of excuses and abuses.
I am tired of pity and scorn, and entitlement and hatred.
I am tired of the modern versions of the ugly laws and the look of disgust and contempt upon seeing me, by strangers who have no idea who I am.
I am tired of ableist jokes and insults
I am tired of abuse substituted for love, because there are good quiet crrpls and demanding shrews who need to be tamed.
I am tired of character assassinations when their arguments are no match for mine or because they will not be held accountable for their lack of real solidarity.
I am tired of infantilization and being treated like a child.
I am tired of excuses and favors because DISfolx aren’t seen as resources in our own experience.
I am tired of offense taken to be out argued or out spoken by a person like me, uppity, articulate crrpl that I am.
I am tired of having to ask for accommodations only to be treated with hostility for even posing the question.
I am tired of assumptions and accusations of people who know nothing but think they know everything, like why if I can walk up stairs one day, in one location, why I can’t another day in another location.
I am tired of entitlement of others to define for me the parameters of my reality.
I am tired of people deciding for me what I need, what I should be happy with, what I should like and how I should behave.
I am tired of people who never read a single book on DISability access, schooling me and ‘splaining to me how it’s going to work.
I am tired of people who seem to be allies, only to find out that they were keeping score all along, and anything they did to create access was weighed against my next request. I didn’t know you were keeping a running tab and that I was now in debt to you.
I am tired of pity and stares and stairs.
I am tired of “well no one else complained” or “there were other DISabled people there so it must be accessible.
I am tired of the assumption that if I’m the only one complaining that others must be comfortable when really it means that others may be silent because they don’t feel comfortable speaking up, and some people will harm themselves trying to fit in, and others won’t show up at all because they know the risk in asking.
I am tired of blaming the victim, of disparaging a complaint, of killing the messenger, of the cult of positivity, of silencing dissent.
I am tired of those who don’t need accommodations deciding without even a dialogue what access means.
I am tired of the expectation of gratitude for half a ramp, or one day’s effort or half measures in general.
I am tired of trying to fit into public spaces at all.
If: you are starting to recognize that ableism an actual real and essential component of white supremacy, capitalism, exploitation, imperialism, colonization, patriarchy, racism, sexism, cissexism and heterosexism, and that we can’t fight injustice while insisting that access is a personal issue that is the responsibility of the “afflicted”, but is rather, a the collective responsibility of the community, the whole community, every community,
You need to start doing more than simply adding “ableism” to your list of ism, and “DISability” to your list of marginalities.
You need to stop bringing in out of town DIS-rights stars to do workshops, instead of local activists who you or the movement has pushed out for so long.
You need to stop finding ways to appropriate the work of DISabled activists,
And stop using the label “neurodivergent” to justify your abusiveness, (even if it is rooted in PTSD or any other real condition and experience).
You need to stop excluding on the basis of who isn’t “cool” enough, or pretty enough for your revolution.
You have to make way for wheelchairs and walkers, scooters and canes and give up scented products.
You have to include DISfolx in all your planning, and incorporate us into your organization as central resources.
You have to have workshops at your events, and you have to attend them!
You have to read the work of DISrights activists.
You have to give up your supremacist language and attitudes that allowed you to feel entitled toward exclusion in the first place.
You need to stop seeing DISfolx as the location of your savior image, your charity case and as central comrades in the struggle.
And you have to resurrect the characters you’ve assassinated instead of stepping over our bodies and claim DISability stardom for your sad self, adding “DISability” and “ableism” to your rhetoric.
You need to publicly make amends to everyone you DISmissed, DISassociated, DIShonored, DISparaged and DIScouraged before YOU DIScovered DISability.
You need to account for your tone policing, and your faux-pologies, and your identity baiting and every other sad excuse you had for why it was okay to tell someone their participation was derailing or decentering, or privileged or entitled.
Not just sometime.
Not just when it’s convenient.
Not just until your other REAL IN THE STREETS REVOLUTIONARIES tell you to stop or make it inconvenient.
You need to account for the lies, slander, misinformation and DIStortions you employed to silence, isolate and chastise anyone who dared attempt the dialogue,who even asked “Can I get my wheels in the door to this event?”, who commented “When you tell those who agree, to rise, you exclude us, and implicate us in the cohort of the oppressors”, who dared to suggest that strategies and protocols be developed and shared, who attempted to include you in that dialogue only to have you turn against them with your admonitions.
You need to resurrect their reputation and bring them back, hold others who maintain this exclusion, accountable.
You need to employ a methodology of inclusion and discard the tired old practice of self promotion and exclusion and movement stars that insists that inclusion means less for those who already have voice, even if it is the seemingly small voice within movements of resistance, especially if it is the seemingly small voice within the struggle.
Because we can’t win against bigotry and hegemony and oppression, if we are perpetuating it ourselves,we can’t be antifa without all the targets of fascism in the movement, and we can’t win this fight without everyone poised for battle.
This article was originally published by Autistic actor Daniel Au Valencia on their blog, Acting NT. The entire text and accompanying imagery are copied here with the author’s permission.
Meryl Streep has managed to make headlines by attacking the world’s lowest-hanging fruit: Donald John Trump. Apparently it is viewed as an act of bravery to stand up to the most blatantly and visibly racist, ableist, misogynistic, xenophobic, homophobic, transphobic, and all around assholish public figure of modern times. It is especially brave to do so as a wealthy abled white cis woman, in the process of receiving a nationally televised award.
At the Golden Globes ceremony on January 8th, 2017, Meryl Streep received the Cecil B. DeMille Award, and used part of her acceptance speech to dredge up a year-old news item: Donald Trump publicly mocking the mannerisms associated with arthrogryposis, the visible disability of Pulitzer prize-winning journalist Serge F. Kovalevski. I call him that, not because I particularly value awards or titles (I didn’t even watch the Golden Globes when it originally aired, and I’m an actor), but because Kovalevski doesn’t appear to name himself a member of any disability rights movement, nor focus his journalism on disability topics. Thus a description of him as a “Pulitzer prize-winning journalist” seems to contain far more relevant information than “disabled reporter” does.
As I and many others pointed out over a year ago, referring to the mocking of a disabled person as some unspeakable evil, or as “the final straw” to sever support of Trump’s campaign, is actually ableist. Mocking a disabled person qualifies as evil, certainly, but it is not more evil than creating a mandatory Muslim registry like the Nazis did with Jews. It is not more evil than grabbing women by the pussy without their consent. And it is clearly less evil than repealing the Affordable Care Act, effectively killing millions of mostly disabled people, not just making fun of us. Why weren’t any of those things the final straw? Why is mocking disability met with greater outrage than actions that are objectively, measurably more harmful, to other minorities and specifically to disabled people? The answer to that question lies in the subtext, something all actors love, within Meryl Streep’s rhetoric:
“It sank its hooks in my heart… It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter. Someone he outranked in privilege, power and the capacity to fight back. It kind of broke my heart when I saw it.”
The underlying tone, neatly bookended here, is pity. Just as disabled people merely living our lives is inspiring and heartwarming, on the flip-side directly interacting with a disabled person in a mean way is a low blow, kicking someone while they’re down. Of course in reality, being disabled doesn’t mean we’re “low” or “down” in the first place (unless you’re literally talking about wheelchairs or dwarfism, neither of which describe Pulitzer prize-winning journalist Serge F. Kovalevski).
Making fun of disabled people is the unforgivable sin of the 21st century, not because ableism is bad – the speech didn’t even contain the words ableism, discrimination, or bigotry – but because disabled people are already so tragic and vulnerable. Hiring people who aren’t disabled to play us in movies is fine. Taking away our civil rights, that’s fine. Literally murdering us, no problem. Just don’t point and laugh. Meryl Streep says we lack “the capacity to fight back.” While it’s true that the president of the United States generally has more power than a given New York Times editor, first of all, Donald Trump hadn’t yet been elected to any public office at the time, and second, Pulitzer prize-winning journalist Serge F. Kovalevski can and has responded to Trump in the way that he himself saw fit. There is no abled savior needed to defend him.
Potentially the most troublesome word choice in the speech is when Streep said that Trump “imitated a disabled reporter.” Not mocked, imitated. What happened to the old adage “imitation is the sincerest form of flattery”? I seriously doubt that Pulitzer prize-winning journalist Serge F. Kovalevski felt flattered by Trump’s childish antics. Meryl Streep, did you mean to imply that acting in the manner of a disabled person is what damned this action, not the fact that it was done for the sake of mockery? When an abled actor plays a disabled character, what’s shameful isn’t the stolen opportunity, but that a disabled character is portrayed at all? Maybe that’s why you didn’t even mention Kovalevski by name. He’s just “a disabled reporter” to you, stripped of his personhood and of all his accomplishments. You also managed to mention the recently passed, openly bipolar Carrie Fisher, but as “Princess Leia” – neither disabled nor a person! You disrespected them just as much as you deservedly disrespected Trump. As you said in the very same speech, disrespect invites disrespect, so maybe I should call you “shit head” or something instead of Meryl Streep.
As I often say in presentations about autism, two people who are both ableist are always on the same page, even if they say and genuinely believe they’re not. If you’re a parent using Floortime to manipulate your child into acting neurotypical, you’re not some radical revolutionary. You’re not special for disagreeing with those in the ABA industry, ’cause actually, you agree with them. You agree that disabled people should not be allowed to be visibly disabled in our mannerisms, and your actions reflect that. If you’re a doctor who says that vaccines don’t cause autism, but if they did, you’d have to be “monstrous” to still administer them, then you don’t disagree with anti-vaxxers. Not when they say being Autistic is worse than having polio. Hey Shit Head, do you think being disabled is inherently shameful? That being visible to the world, with uniquely disabled mannerisms, is shameful? If so, you and a guy who’s basically famous for being an asshole are in total agreement.
Image description: Side-by-side photos of Donald Trump (left) and Meryl Streep (right). In comic book speech bubbles, Trump says “I hate disabled people!” and Streep replies “Me too!”
It may seem like I’m over-analyzing a single 1-minute paragraph within a 6-minute speech. That’s because that 1-minute paragraph is all Meryl Streep said about disability. The rest of the speech, well, it was a calculated action from beginning to end: After bullying, she segued into asking her audience to support the Committee To Protect Journalists, and indeed there was a reported spike in donations right after the Golden Globes. That’s great for journalists and probably needed, but was the fact that Kovalevski is a journalist really the centerpiece to this story? Where is the spike in donations to ADAPT, or Not Dead Yet, or the National Council on Independent Living? With regard to disability, all this Golden Globes speech managed to inspire in its viewers was warm fuzzy feelings. It glossed over everything notable that disabled people did in the last year, and instead used one person as a nameless prop to add egos to the list of things being stroked in a rich abled white people’s circle-jerk.
What about the parts of the speech before Kovalevski and Trump?
Before reading any other perspectives, I watched Meryl Streep on YouTube so I could start with my own opinions. She began with what sounded like a speech about diversity. I may not be a comedian, but that should inspire laughter: An abled white woman, delivering a speech, to an audience that is 94% white and 0% visibly disabled, praising that audience for being so diverse. She gave shout-outs to specific actors, and to her credit named their countries of origin including Israel, Kenya, and Ethiopia. But that’s only a third of the names she chose. I’m sorry, but four (4) U.S. states, Italy, and Canada does not qualify as “diversity”. That’s just six (6) white people. To imply that it does reflects denial and rationalization.
Streep made no mention of disability when applauding the diversity of Hollywood. It was as though she did not see the connection within her own speech. No Affordable Care Act. No underemployment of disabled actors. No disability rights advocacy groups. No criticism of ableist movies like Split, The Accountant, and Me Before You, which undermine the work of disability rights groups and fail to employ disabled actors, many of whom are alive thanks to the Affordable Care Act. If there were any invisibly disabled actors in the audience, I don’t think they were very impressed with the bravery of Meryl Streep to utterly fail at addressing any of the real issues. I, a disabled actor, am not impressed. I, a disabled actor of color, am not impressed.
(Work in progress. I especially need links regarding restorative justice. Also, please post your favorite links on this issue.)
Links on the ongoing exploration of cross generational trauma, something that has impacted my lineage and my life tremendously and must inform our activism and policy as we try to create systems of support and determine reparations. Some links posted for future reference. Please feel free to comment on the links and critique their premises. Some basic concepts to consider as we recognize and explore recent evidence that it’s not just socialization and psychological behavior that explains the cross generational transfer, but that the trauma actually is in our DNA.
The wisdom of our ancestors– what has been lost, stolen, forgotten and abandoned– language, customs, wisdom, healing, is also in our DNA. We embody in our cellular memory all the hurt, but also all the love and knowledge of our ancestors.
It stands to reason that it is not just victims who carry the DNA memory, but also the perpetrators. They two carry with them– entitlement, power, abusiveness, violence, guilt. Their inheritance isn’t just the monetary inheritance of centuries of theft and enslavement and exploitation, but the entitlement of and power gained from the abuses inflicted on our ancestors.
That is, power and powerless carry with us, into each subsequent generation this relationship of owner and slave, colonizer and colonized, Abuser and abused, Victimizer and Victim.
I reject the rejection of the term victim. The assertion by many that we choose to be victims, we perpetuate the systemic and cultural tendency to blame the victim, either for their victimization in the first place or in their healing and response afterward. By thinking we, individually can step outside of this history without collective work and collective healing and accountability is to side with oppression and perpetuate abuse. Blaming the victim is the religion of systemic and cross generational trauma. Another term for victim that can be used, is “target” and the term “survivor” is also acceptable, but with the understanding that there is nothing more moral about being a survivor than having not survived. It is NOT a choice. To privilege survivors over those who were massacred is to embrace essential white supremacist ideologies of fitness and worthiness.
I reject the idea that soldiers are victims. Soldiers are perpetrators. If perpetrating violence is traumatic, then that’s easy– stop perpetrating violence.
Trauma is insidious– it can make us lash out at the what triggers us, which may NOT be what caused the trauma or the flashback at all. Like the child who dives under their chair when a plane passes over head, miles from the location of the trauma of war, where passing overhead planes meant the dropping of bombs, those of us in communion, where spaces are actually safe, are not the source of the trauma, just because we are the location of the trigger. It is the work of our PTSD healing to learn to recognize the difference between danger, and the flashbacks that come up when we are safe.
I also want to point out that POST Traumatic Stress Disorder, may not be accurate. Much trauma is not only in the past, the distance past and our DNA, but is ongoing. It is exceedingly difficult to recuperate from ongoing trauma because the wounds are not only fresh, but are constantly being reopened.
Terms like “Children of the Holocaust” and “Post Traumatic Slave Disorder” are headlines here, for the much larger body of work on trauma among Jews and African Americans, respectfully. I use those terms because they also reflect the narrative within those communities, even where the issue of cross generational trauma may be greater than the scope that term may imply.
too often because of its scope and intensity, 6000 years of who Jews are and what we’ve done and what’s been done to us gets encapsulated in the 6 years of the Shoah, and now it Israel. As if aside from 6 years of being the victims of genocide and 60some years of being the perpetrators, is the sum of all we are. (That’s not the narrative, the narrative is that there is some redemption and deliverance for the years of suffering, via Zionism).
The Shoah (Holocaust) came out of years of abuse and genocide– expulsions, crusades (where many Ashkenazi Jewish towns were massacred by the invading armies on their was to the Holy Land), pogroms, pogroms, pogroms, ghettoization, more expulsions, humiliations, incarcerations, segregation, discrimination, etc. Jewish trauma, specifically in Europe, reaches back hundreds of years. For Jews who were not in Europe, the Shoah impacted them in Northern Africa, and the trauma for non-European Jews was most experienced as colonization in the particular geographies of location. The Holocaust studies on cross generational trauma can inform the larger discussion on cross generational trauma, but it is not an isolated event. That degree of racism doesn’t just pop up like a camping tent and disappear just as quickly. The study of Holocaust survivors and their children is very important to this discussion on cross generational trauma, and it provides a very clear and distinct set of data, but there may also have been a predisposition to those genetic changes and the other changes that were passed on to children, due to the centuries of abuse and a much slower genocide, particularly for European Jews. (And by European Jews I am referring to Jews who were geographically in Europe, which would predominantly be Ashkenazi and Sephardic Jews, but would also include many North African Jews and Middle Eastern Jews, in Europe.)
Children of the Holocaust
(And other Jewish traumas, but this was the title of the book that started the current discussion on cross-generational trauma)
“The Truth is that disability has been with us, in us since the beginning of time. Disability has held and kept us. It is in our marrow, in our blood, our sweat and tears. Disability does not make us less than, it makes us who we are. Ableism and anti-Blackness are the enemy. Disability is our kin. While the world has convinced itself and the Black community that disability is a bad word and a bad circumstance. It is neither. Disability and Blackness is pride. Disability and Blackness is innovation. Disability and Blackness is brilliance.
How The Effects Of Trauma Can Be Passed Down From One Generation To The Next http://www.huffingtonpost.com/2014/… “Previous research has shown that the behavioral effects of trauma can be passed down to the next generation — but this research had only demonstrated that this transmission takes place with trauma’s negative effects, such as depression. Now a study on mice, recently published in the journal Nature Communications, suggests that the adaptive benefits of trauma might also stay alive in families through the years.”
The Violence in Our Heads: “An unsettling question is whether the violent commands from these voices reflect our culture as much as they result from the disease process of the illness. In the past few years I have been working with some colleagues at the Schizophrenia Research Foundation in Chennai, India, to compare the voice-hearing experience of people with schizophrenia in the United States and India. The two groups of patients have much in common. Neither particularly likes hearing voices. Both report hearing mean and sometimes violent commands. But in our sample of 20 comparable cases from each country, the voices heard by patients in Chennai are considerably less violent than those heard by patients in San Mateo, Calif.” http://www.nytimes.com/2013/09/20/o…
1. People need to have access to food that is good for them, their history, culture and biological needs.
2. Food needs to be raised, cultivated, slaughtered and marketed in ways that are safe, humane, and environmental for people and animals
3. Comparing animal livestock to slavery or other human systems of torture, genocide, concentration camps, etc. is offensive to those who have endured those systems and diminishes and desensitizes people to those systems.
4. Manure, a mainstay of organic farming is as much an animal product as meat, milk, eggs and leather. (The same goes for blood and bone meal which are also used as fertilizers). I don’t know how anyone can think she can step out of that reality. In an organic garden/farm, the carnivores are the good guys, because the herbivore “pests”– that’s what they’re called– eat the crops. Farming is cruel to plant eating insects, snails and other absconders.
5. Condemning eating dogs or horses while having no problem with killing cows, ducks, chickens, sheep and goats is cultural bigotry and self righteousness.
6. There’s a circle of life and for many species, either as carnivores or omnivores it includes eating meat.
7. There are some medicines that come from animal products and discussing the morality of eating meat without considering that, is outright ableist, and in trajectory, genocidal.
8. Industrialized society, specifically settler colonialist entities are disconnected from the trajectory of most of our actions. food is no exception.
9. I have raised and slaughtered my own food. i am aware of the process.
10. Whenever we save money on something it means a person is probably only making 2$ a day on that product. that outrages me.
11. People going about their lives as if other people weren’t in prison unjustly and inhumanely or being bombed by the empire, that outrages me.
12. The conditions that workers endure to put food on our table, that outrages me.
13. I really see no moral difference in outcome, all things relative, if someone knows where meat comes from and if they don’t. Dead is dead. Though I do think more awareness would bring about greater food justice to people and animals.
14. I have no idea how animal rights activists “check” themselves. it’s not like Bessie The Cow can say to you “Hey, I know your intentions are good, and you’re really up there with that human savior syndrome, but you don’t really represent my interests. You see, i’ve been historically selectively bred specific to a particular human need for thousands of years, and if they stopped breeding me, I would cease to exist, my species would cease to exist. so unless you’re expecting to have a herd of cattle as pets, or are demanding huge public spaces for us to roam freely, , which really defeats the environmentalist arguments, I really don’t see how all your efforts don’t simply result in extinction for me and my cow peeps.”
15. Would that food police, food fascists, evangelical vegans and animal “rights” activists focus their outrage in responding to environmental racism, food deserts, equitable access to food, food choice and healthy food options.
16. I support species rights– the rights of species to endure. I support environmental policies that protect people and animals.
17. The dismissing of the eating of meat as “simply cultural” is another example of cultural imperialism and racism. Let us instead support traditional food production, which is often much more consistent with humane treatment and environmental safety and stewardship. We must respect historic and traditional hunting grounds, animal domestication, agriculture, family and communal farms and permaculture.
18. Live and let live– I don’t see meat eaters going around demanding everyone eat meat, as part of an essential political mandate. (Though the bullying of vegans and vegetarians to eat meat, by meat eaters they know is also unacceptable behavior.)
19. Animal “rights” movements that don’t address the issues of DISability access to society, including to autonomous food choices and body autonomy and don’t denounce Peter Singer and PETA are not allies in any struggle for social justice. so just don’t even talk to me. you weren’t talking to me anyway. i wasn’t really human– or animal, for that matter.
The animal “rights” movement has a seriously problematic history of racism, sexism, classism and ableism, so anyone who is advocating for animal “rights”, needs to center these issues in their politic and severely separate themselves from the mainstream animal “rights” movement.
20. The “animal ownership is slavery, meat is murder” argument AND the environmentalist argument are incongruous with each other. Either meat is slavery and murder and after the dictatorship of the vegan proletariat, there will be wild herds of formerly selectively bred domesticated animals, maintained at human expense, having the same environmental impact they have now, except that they won’t become meat, OR the total extinction or partial extinction of entire species so as to not have that environmental impact. Either way, these domesticated animals will nave no autonomy from human decision making, and as such will continue to be subjected to human authority.
21. The insistence that one diet would work for everyone is cruel, supremacist, racist, ableist and patronizing. Whenever we assert that our lifestyle, diet, way of life, habits and morals are the only correct ones we are asserting arrogance and hegemony. Check that and check yourself!
22. The issue of environmentalism including veganism as individual choice is a distraction from capitalism in general. We can all recycle and compost and think that’s going to make a difference while corporations run amuck and unchecked. That’s where the attention needs to be, in real struggle against this hegemony that is destroying the earth, and not on appeals of guilt and the illusion that this is simply about personal choice for those who have the option of actual choice.
23. The racism, ableism, sexism and classism that is embedded in the animal “rights” movement prioritizes animals above entire groups of people, and that allows those with certain choices to assume a false moral high ground without actually challenging systemic oppression.
White savior syndrome, paternalism, self righteousness, unchecked provides outlets and platform for legitimizing white patriarchal ENabled ruling class hegemony; the antithesis of real social change, providing the illusion of social justice without actual justice.
24. Animal “rights” essentially is used to take away from or even perpetuate systemic oppression against marginalized people. In that regard, it will never really be about animal “rights” but will instead simply support abuses of people by means of a meaningless distraction.
25. For many activists who include veganism in the larger issue of social justice but continue to insist that meat is murder and slavery, maintain this position of moral supremacy over people they are in “solidarity” with. It’s one way entitled activists can maintain the moral high ground in the context of systemic oppression and inequalities in the movement.
(In numbering these points I am not suggesting a hierarchy of importance. I’m simply counting.) um meat, i love you let me count the ways.
“Food policing is an area in which all sorts of assumptions are made about class and ability status. It goes hand in hand with the idea that people have an obligation to be healthy, that all bodies are the same so there’s only one way to be healthy, and that there is virtue in eating “right” as dictated by current authorities in the food world. Like, say,MichaelPollan,whoiseditorializedfawningly in numerous publications all over the planet for his “simple” and “helpful” food rules.
2. Unspeakable Conversations (Should I have been killed at birth? The case for my life.)
He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like min…
www.huffingtonpost.com “The truth is there is no meal we can eat without killing. None. A trip to your local grocery store for tofu and spinach leaves may not include a single animal product but the harvesting of such food costs endless animal lives. Growing fields of soy beans for commercial clients means removing habitat from thousands of wild animals, killing them through deforestation and loss of their home. Songbirds and insects are killed by pesticides at legion. Fertilizers are made from petroleum now, and those fields of tofu seeds are literally being sprayed with oil we are fighting wars over. Deer died for that tofu. Songbirds died. Men and women in battle died. And then when the giant tofu factory harvested the beans they ran over those chemical oil fields of faux-food with combines that rip open groundhogs, mice, and rabbits. Tear apart frogs and fledgling birds. It is a messy and bloody business making tofu or any of that other non-murderous food.What about organic tofu and vegetables? That doesn’t include chemical fertilizers and the companies are mindful? Right? Well, that is correct. But if you are not using oil to fertilize your crops then you are using organic material: manure, blood, bone, fish, etc. You may be a vegetarian but your vegetables are the most voracious of all carnivores. That small farm at your local green market needed to lay down a lot of swine blood, cow bone, and horse poop freeze-dried in bags marked “ORGANIC” to grow those carrots so big and sweet. Animals are an integral part of growing food for us, as food themselves or creating the materials that feed the earth. And the earth must be fed.”
your ideas aren’t new to me. i don’t talk about my illness nor am i sick in order to get attention or because this is what i actually want. i have enough talented and intelligent, that if i weren’t this sick, could get a whole lot of attention doing a whole lot of things. as it is, i could get more attention pretending my illness didn’t impact my life the way it does. i could get a whole lot of attention pretending to be positive and happy, when i’m really not. i think there is a greater truth to be told, and a cost to that truth, but i also appreciate that my ability to articulate my experience is of benefit to those who also endure what i endure, but don’t have that capacity. —they tell me this! hearing from people who are validated by my words is priceless and makes my efforts valuable, to me, and apparently to others.
i think we live in a very compassionless society that blames people for their misfortunes and loves stories about people who “made it”. it’s a lot easier than actually taking care of each other. it’s easier than compassion, and it’s a politic that supports a brutal ruling class– that the rich got where they were, because they THINK better, that healthy, beautiful people are somehow more spiritual, superior.
it’s a politic that i embraced at one point in my life, and it rejected me. it doesn’t work. at a certain point all it does is create huge areas of denial –denial of pain, denial of people from the margins.
i do make healthy choices– eat healthy foods, do yoga, meditate, take vitamins, etc. i’ve tried many expensive modalities for treatment. i’ve thought good thoughts, etc. i’m sick. it’s just the way it is. (actually there are things i can do to get better, but some of them are too expensive right now. i simply don’t have the money.) thing is, when i get sick like this, speaking the truth about my condition, and resting resting resting is what helps. i’ve had this condition for 15 years. i know what it takes to manage it.
friends who want to help can offer to do so. they can ask my partner what they can do to ease his responsibility. they can give me rides to drs offices, bring over food, help out around the house, bring groceries, help raise funds for the care i can’t afford, support my work, or even, just visit. just sit and bear witness to what i real, what the present challenge is. — the things people used to do for each other, what they still do in compassionate communities.
life isn’t changed because we think good thoughts. nice idea, but it just doesn’t work that way. i’ve know a lot of people who were really silenced and marginalized with this thinking– people who have survived cancer, but not because they thought better than the people who didn’t. i lost friends to cancer who tried to be positive, ate all the right foods, did all the right things. i think it added to their stress, when what they really needed was to say exactly how frustrated, scared, alone they felt.
we tell people they create their own condition because it excuses a whole lot of injustice and marginalization, and because it makes us comfortable. it’s not easy listening to people in pain. it’s not easy listening to people who complain. it’s a lot easier to silence that in a spirituality of complicity and obedience. it’s certainly a lot easier than actually fixing this mess the world is in, and creating a society that meets human needs.
i also am not a fan of madonna. (the friend who this is to, used her as an example of positive actualization and insight). she’s a very mean and narcissistic person who has left a lot of bodies in her wake. the way she treats people who work for her, in her own words, is hardly positive, kind or healing. she’s no one i look up to. she has masterfully marketed her extreme talent into meaningless pop drivel and sexual objectification. as for her attachment to kaballah– it’s an ancient tradition, not a passing fad. it is very complex, not something that can be simplified for mass production. cultural appropriation is never attractive.
i haven’t come to these ideas casually, nor have your suggestions failed to make their mark on my life, nor have i rejected them capriciously.
i think greater healing though is had through telling the truth, no matter how inconvenient or uncomfortable. i know i am at odds with the culture around me, but nothing changes without complaints and non-conformity. i would rather find myself a small counterculture of resistance than find ways to please and appease an intolerant and compassionless society that blames people for their conditions, instead of insisting on ways to meet human necessity and asking people what they need.
i don’t want to have this conversation more than once, because i find it very hurtful and isolating. there is something more negative than the negativity sick or otherwise marginalized people are often accused of. it is the negativity of negating the full range of human experience and existence. it is the negativity of telling people what they have to say, who they are as they are, has no place in the larger society and is their own fault, if they only thought better or adopted some magic protocol.
there is a difference between curing an illness, and healing. healing is a much deeper process that requires deep truth telling, process and transformation. it is often quite wrenching, lonely and painful. (it is why so many cultures have initiation rituals that involve pain).
(at this point in time, there are no cures for my condition, though there are ways of managing it.)
i am not interested in maintaining the world the way it is, on either a small or large scale. i am interested in the deeper transformation, the deeper healing, and we won’t get there by insisting we need to think positively. we will only get there when we can clean up the muck that keeps us apart, that separates, that exploits and that poisons us. we certainly won’t get there by telling people in difficult circumstances, that their reality exists because they want to live that way.
(anyone who really knows me, knows i have a tenacity and a spirit that is hardly complacent or stagnant.)
my illness is caused by trauma and environmental toxins. without going into the details here (storytelling doesn’t mean some things aren’t private), the trauma i endured most people don’t survive. the trauma i endured is rooted deep in the power relationships of a brutal body politic, that i am determined to fight, on every level.
i tell the truth. i don’t just lie in this bed, sick, meditating, waiting, eating well, etc. i share my journey and i express my journey as a political one, among the larger issues of the day, imperialism, health care, education, oil spills, domestic violence, genocide, racism, sexism, ableism, heterosexism, etc. and i challenge those systems that allow these negative realities to go unchallenged under a cloud of enforced positivity and false blame.
This is why I don’t go out much. This sort of thing happens pretty much every time I try to access my community. It isn’t so much the lack of access, but the absolute hostile indifference to my attempts. I don’t take it personally, because it’s obviously common policy and has nothing to do with me. It has to do with dis-ability and common attitudes against inclusion. But it does upset me and it does wear me down.
I wanted to go to the LACMA exhibit, A is for Zebra, http://www.lacma.org/art/exhibition/zebra , because I’m working with art and text, and that’s what THIS exhibit is about. (Actually, it’s a great example of how NOT to use text with art, but I’m not writing THAT article. I’m writing how a structurally accessible venue locks out –as in, with a key– people with dis-abilities.) I found out about the event on LACMA’s web page. http://www.lacma.org/art/exhibition/zebra . This exhibit is in at an off site LACMA gallery, in an elementary school. The information on the web site clearly says: “The gallery is open to the public weekdays 2:30–6 pm. The gallery is closed December 19, 2011–January 9, 2012, January 16, and February 20.”
“Visitors with Disabilities LACMA offers wheelchairs and assisted-listening devices for use during your visit. There is no additional charge; photo identification is required. Guests requiring assistance should plan to arrive curbside along Wilshire Boulevard in front of Urban Light, at the intersection of Ogden Drive and Wilshire, or at the intersection of Spaulding Avenue and Wilshire. Proceed to the Welcome Centers for assistance. For wheelchair access to the plaza and galleries at the eastern half of the museum’s campus, elevators are located to the right, immediately inside the entrance at Spaulding Avenue and Wilshire.”
Well, OBVIOUSLY, that’s about the actual museum, and not the off site exhibit, but nowhere on the LACMA page does it say the off site event is NOT accessible. and it clearly says it’s open to the public.
OPEN TO THE PUBLIC
OPEN TO THE PUBLIC
OPEN TO THE PUBLIC
OPEN TO THE PUBLIC
BUT just in case, I called the school. I didn’t get the name of the person I spoke with, but she was very friendly and informative with an authoritative voice that gave me confidence in the information she relayed to me: yes, the gallery IS accessible, and there is parking off of Corondolet, around the corner from the actual address of the school. (that parking could be validated). I asked again, if it was accessible and she assured me that it was. No other instructions.
GUESS WHAT!!!! (it’s not accessible.)
After walking past the unstaffed (but wide open) school office, and through a playground with both supervised and unsupervised students, through a maze of ramps and steps, having asked directions from a variety of children (there was no staff at all within our range of conversation), we arrived at a staircase and an elevator. The staircase descended onto a patio, around a corner to the gallery. The elevator would have provided access, except it was LOCKED. There was no signage, no instructions, no buttons, no bells, no personnel within sight or voice range (even if I had yelled!) –See photos below. Luckily I wasn’t alone, and luckily I had my walker and not my scooter, which is considerably heavier, so my friend, another artist/photographer, and I managed to get me and my walker down the stairs to the gallery doorway, which was totally blocked to wheelchairs and walkers, by student book bags that were piled in front of the door way. (In case access isn’t an issue, a fire hazard maybe?)
At this point I should mention that the gallery is located on the corner of Parkview and Wilshire, and there’s actually a ramped entrance RIGHT THERE, but it’s LOCKED. To access the gallery, the public HAS to go around the block, and go through the school and 2 playground areas. — so despite two means of structural access— the elevator and the gate, the gallery was NOT accessible because both structural means of access were LOCKED, preventing dis-ability access. (It should also be noted, that a direct entrance to the exhibit makes much more sense in regard to student security, than an entrance through the school and the playground, where any adult can simply walk in and have total access to the students, who, after school have very minimal supervision.)
TO CLARIFY– THIS IS NOT AN EXAMPLE OF AN INACCESSIBLE VENUE ATTEMPTING TO, OR FAILING TO PROVIDE ACCESS. THIS IS AN EXAMPLE OF A STRUCTURALLY ACCESSIBLE VENUE THAT DENIES ACCESS BY NOT ALLOWING ACCESS VIA THOSE BUILT IN STRUCTURES.
A man came out and asked me what I was doing, and I told him I was taking pictures in accordance with LACMA’s photography policy (no flash or tripods. There were no children within the range of my camera, either, by the way!). He insisted the exhibit was closed to the public, and informed me that he worked for the district and was evaluating the after school program. (At no point did he tell me to leave, not to take pictures nor did he ever call security!) I informed him that the exhibit was in fact open to the public, was on the LACMA web page, and was supposed to be wheelchair accessible, and that I had also called the school office which had confirmed all of that information. In his lack of information he continued to insist it was not open to the public. At that point he ran to get a LACMA employee, a young woman, wearing a LACMA apron, who approached me and told me she provided customer service. She went on to tell me that a person needing wheelchair access was supposed to go to the main office, and that the custodian had a key. (So a person in a wheelchair or a walker, is supposed to make their way around the school, know to ask for a key, know if they get to the locked elevator, to get a custodian, who could be anywhere on campus.) This young woman explained that they rent the space from the school and access isn’t LACMA’S responsibility. She also added that the street entrance was locked at the insistence of the school. She seemed very sure of herself that LACMA bore no responsibility for access to the exhibit, and especially empowered to make sure I knew that. At no point did she offer to help me nor did she show any concern for the issue in general, the lack of information or my particular experience. Then she told me she wasn’t the person I was supposed to speak with. I then asked her why she had approached me. A young man joined in with the same trope. He then told me to stop “bickering” with him in front of the children. (There was no concern about what would happen if a child in a wheelchair attempted to access the exhibit and had been subjected to the same obstacles and the same hostile indifference. This is, after all, a public school and an exhibit open to the public. A point I did make!) I told him again, that HE had approached ME, and if he didn’t want to talk to me, to stop talking to me. He continued to talk at me, explaining how it wasn’t LACMA’s responsibility to make the exhibit accessible. I told him if he didn’t want to talk to me, he should stop talking to me.
I attempted to call LACMA while the man who was upset with me for talking to him, continued to talk at me and about me, in front of the children. No one answered at LACMA, and I attempted to enjoy the exhibit, but I was upset and distraught at the frustration and indignity, as well as the repeated abuse of my personal space by personnel who engaged me, while insisting that they weren’t the people I should be speaking with.
Finally, I asked the young man if he could contact his employer, that I had been unable to reach anyone at LACMA. He handed me a leaflet that had a phone number on it, but he wouldn’t actually help me contact anyone. I asked him repeatedly for help and he repeatedly refused to help me.
Everyone who spoke with me was more upset with me for raising the issue of lack of access than they were with the fact that I had attempted to attend a public event hosted by a public museum, at a public school, and couldn’t without difficulty and assistance, because both means of accessing the event, were locked.
I called the number the man gave me and got the voice message for a Sarah Jesse, which explained that she would be out of the office until March 5. (Almost 10 days ago. All this happened on March 14). I left a detailed message. I hope she gets back to me. I’ll follow up if she does. Don’t hold your breath. I’ll also call the school in the morning, since the one district personnel I encountered knew nothing about the school’s responsibility, and the LACMA personnel put all the responsibility on the school. I’ll also send them the link to this blog post. One would hope they would address the issues of access and school security. (Again, don’t hold your breath!)
Aside from simply not existing, I’m not sure what the people who approached ME expected of me. THEY asked ME what was wrong, I told them. My observation didn’t seem to upset them as much as the fact that I was articulating it. Or perhaps, they just expected me to accept their excuses and stop scowling? Say something to make them feel better? Or maybe they simply wanted to convince me that my exclusion was an obvious and acceptable consequence of the conditions and excuses they were hurling at me.
If this story shocks you, you don’t know jack about dis-ability discrimination. Just another day. Just one more reason why I don’t go out much. Something like this happens pretty much everywhere I attempt to go.
To increase size of pictures for greater detail, double click the image.