Friday, October 21, 2016

Reclaiming My Voice, Naming Names: I Will Not Be Shamed Anymore

An Open Letter to Stephanie Barron at LACMA

What salutations could matter? This will not be pretty prose. You can critique that if you choose, losing yourself in a maze of sentences less perfect than you'd write. But I affirm that sentences don't matter--people do.

You took my voice, my agency, my sense of safety. The staff at the Nasher apologized to me. You never did. I can only assume that to this day you ban service dogs and power wheelchairs from the Ken Price exhibit. Objects more priceless, more precious than people turned away. Is this what he wanted? Perhaps so.

You did a walkthrough at Nasher with the staff before the exhibit opened there in 2013. According to Ester Ippolito, you specified, emphatically, staccato, "No wheelchairs, no strollers, no dogs." Perhaps the words were a different order; I will have to look: "No strollers, no dogs, no wheelchairs." "No dogs, no wheelchairs, no strollers." Schnell, schnell, schnell. She and the security guards took up your commands and enforced them. Ester Ippolito did not let us in. The security guards denied us. We were not permitted. It was policy, you see. It was written in the contract.

You thought it would not matter, that there are plenty of other places we can go. This is dangerous reasoning, excluding people, depriving them of their civil rights, thinking it's okay to bypass democracy. As a museum curator, you know about accessibility requirements; even NEA grants require statements about exhibit accessibility in them. The Target grant supporting that night's events specified nondiscrimination. You thought it would not matter. You thought we do not matter.

That night, the museum was bustling outside in the crisp air, quiet inside. Quiet except for me, protesting, in abject fear. My bones break easily, brittle from two separate processes. I have nerve pain that is agonizing. I do not want to ever have a security guard ever again yell at the top of his lungs at me across a crowded space, over the heads of murmuring families, in front of preschoolers, then attempt to football tackle me, his head lowered and shoulder first (my husband intervened to take the contact), pushing me into a glass staircase--glass!--open to the floor below, as we, away from the art, tried to leave the building. For trying to leave, not for attempting to see the exhibits. That's what he was told to do. Humiliating me in front of my cardiologist and his young children in attendance that night, in front of families of all colors.

When I attend my daughter's graduation, when I go furniture shopping, when I take the dog to the pet store with the vet office inside, when I go to the hospital, I break into a cold sweat, white blind terror and shallow unseen breaths, petrified as wood when a security guard or police officer approaches. You never know what's going to happen. I am often by myself, and I am terrified, absolutely terrified. My dog tenses, afraid, then curls into me. And my son--my son turns us down when we ask him to go somewhere with us. Last week he turned down a spring trip to D.C. with other high school students. He's afraid of urban areas now, of the buildings and spaces; he tells us he has anxiety and can't handle museum after museum. I have to stop going to the vet inside the pet store.

I have to wonder how you see us--people with disabilities. Without families, heaving and whuffling our way through life, blundering into walls, errant people, and invaluable art. Invaluable. Art. Us. Not Art. Not valuable. Not worth. To be steered into public, dirty wheelchairs without support. That we could not sit up did not matter. As if we did not go through seating clinics to be matched to chairs we are able to steer well. As if one wheelchair were replaceable with another. And as if we're devoid of context, devoid of education, not worthy.

This visit was to be something special, something fun for us. The air crisp and cool. A very rare trip out--my teenager, primarily housebound, homeschooled, and unable to stand long, finally diagnosed the next year with a cardiac disorder and a genetic disorder. I, rarely able to leave my home--at that point, a few times a month other than medical appointments. The next year, I would return to work a few hours here and there at a tiny business, out of the public eye. But I--we--could not go to museums or downtown attractions since.

In deeming us untouchables, I'd say you placed a value on our heads, as has often happened in history. But you didn't. The art had value. I, my child and his friend, my husband, my hardworking dog, not even worth the apology. Not worth consideration. I cannot help wondering what sides you would take in other circumstances, who you would let into museums, other spaces, and who you would order away.

The embarassment I felt, in front of strangers, in front of my doctor, in front of our teens--I can't overcome this. I can't. Nor can I overcome the blinding fear. It's there. That's the myth of overcoming--that the raw feelings aren't still there. It's a reflex, not a choice. Like being burned. Like being afraid of a dog, for those that have been frightened. It's what evolution does to us to protect us from harm, from the actual physical danger to us that resulted. This I can do nothing about. My cardiologist increased my medication for the cardiac problems that returned and increased. I sought the support of friends and family, those with disabilities and those without.

I visit my daughter in LA next month, and I will again. I am so lucky she was away that night--at least she was away. I am terrified even now of what will happen during air travel. I know the stories. I know that we cannot go to LACMA now or on other visits, that we cannot take the risk of ruining memories too few, outings too precious, too valued, too worthy, too invaluable.

I already experienced trauma a few years before. My sense of safety was already shattered. Look at the list of my writings to the right. 2011--it's a blank. It's gone. I was in 2013 trying to rebuild my life. The service dog, safe outings, family.

That night broke me the rest of me.

But the glass, it was intact.

I know you see me, those like me, as trash, as inadequate less-thans, probably disease ridden, ill-clothed and unpresentable, to be hidden away, done away with even. I was not the only one strongly affected that night, and I know there were others in the weeks before we attended--no, attempted, to attend, the exhibit. I never saw a Ken Price sculpture. I love works in glass. I adore them. The fragility means something to me, you see. Last night for the first time I saw one online. I had to close the window. I know it's not meant for me. I can't expect your empathy. But you won't hold my voice in your hand anymore.

I could have pursued a complaint, complaints to ensure that museums stayed open for other people with disabilities. Take a breath. That deadline is past. But the truth is, I was terrified of you. Just as I was terrified of my attacker years before, I was terrified of what you would do to me.

Gradually, I have reclaimed my voice. The hours of work. Being able to answer the phone. Moving away from my attacker, abandoning our home of 16 years. Making a complaint against a hospital security guard who physically threatened to punch me, resulting in his firing. Standing up to a man demanding our personal medical information this week. Seeing other women, like Britt Johnson, reclaim their voice from those who take it. So why not return to museums, why not reclaim them? It would be like returning to the arms of my attacker. I can't. My son can't. Sure I lose something, quite a lot, actually--my beautiful home, the enrichment of art I love. But I will not be afraid of you and what you can do to me anymore.

But no, I come back to this. I edit. I am still afraid. And my son.