An Open Letter to Nancy Grace

Dear Nancy,

I am deeply disturbed by your gross ignorance and ableism on an episode of your show, which aired August 7th, 2012.  The episode in question examined the murder of 22 year old Gabriel Philby-Zetsche.  Philby, who had cerebral palsy, was found dead in the apartment he shared with his mother on July 30th, with stab and bludgeon wounds to his head, face, and chest.

On your show, you expressed surprise that Philby was not receiving any sort of government assistance.  First of all, it is extremely insulting that you automatically assumed that Philby could not work and “should have been receiving….[services] from the government”.  Most disabled people are fully capable of working.  Even disabled people who do not work are not necessarily on government benefits for a variety of reasons.  As anyone who has ever tried to apply for disability benefits knows, it is a drawn-out process, requiring access to health care, extensive documentation of disability, which not all people have the privilege of obtaining.  Furthermore, even if the application process is completed, the Social Security Administration’s definition of disability is complex, and many people do not get approved for benefits.  It is worth noting, as well, that disabled people face the same employment barriers as non-disabled people in the current economic climate.

You also questioned Philby’s “functioning level” and stated that because he was able to help his mother with the cleaning and do other domestic tasks, he was not a “burden” on her.  This seems to suggest that more severely disabled people are burdens on their parents or caregivers, and therefore their murders are somehow justified.  This is not a new phenomenon.  In fact, this blog post by Autistic activist Neurodivergent K includes a (very) incomplete list of disabled people murdered by family or caregivers.  In all of these cases, comments were made trying to justify the murderer’s actions, citing the “difficulty” in caring for a disabled child and what “burdens” they must have been, as if a disabled person is no more than a heavy package, a weight on someone else’s shoulders.  You would never claim that nondisabled children are burdens on their parents.  Why, then, does the addition of a disability suddenly make them burdens and less worthy of love and care?

Finally, I am troubled by your choice of language.  Throughout the episode, you repeatedly referred to Philby as “suffering from” and “a victim of” cerebral palsy.  These are phrases designed to evoke sympathy and pity, things that disabled people neither want nor need.  I do not pity Philby because he was disabled.  I pity him because he had a life that was cruelly cut short.  An acceptable alternative would be to simply say that he “had cerebral palsy”.  Philby was not a victim of cerebral palsy.  He was a victim of murder.

I applaud your effort and dedication to shedding light on this horrific crime.  I hope my letter has given you pause and will advise you on how to proceed on disability matters going forward.

Sincerely,
Cara Liebowitz

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"Have you tried counseling?" The Stigma Against Psychiatric Medication

When you first begin having mental health problems, everyone leaps to recommend counseling.  People rush to send you recommendations for therapists, caring professors include the link and phone number for the on-campus counseling center in their syllabi.

No one ever tells you what to do when the counseling doesn’t work.  When you end up crying uncontrollably during and after each session.  When you dread your counseling sessions so much that you cancel, because you’re having a good day and you don’t want all those emotions dredged up again.  When each session only serves to remind you of how utterly awful your life is.

And that’s where medication comes in.  Medication as an option, that you have to research yourself, because no one ever suggests it.  And there’s this constant current of disappointment just below the surface when you talk to people about it.  They say “Have you tried counseling?” and then when you inform them that yes, in fact, you have, they assume you just haven’t tried hard enough.  That maybe it was the wrong counselor, or the wrong type of therapy.  They urge you not to be so hasty, not to let one bad experience taint your vision of therapy.  “Go back!” they say.  “Try again!” they say.

Why the hell would I want to go back to a treatment that caused me extreme emotional distress?

It’s because there’s such a stigma against psychiatric medication in our society.  Therapy is accepted, so commonplace it’s almost trendy.  But medication is a no-no, because as soon as you go on medication, there’s something Wrong with you.  You’ve become one of Those People, those crazy people, who relies on medication to be stable.

“But medication can have side effects!” they say.  And true, that is certainly an issue you have to consider when going on medication.  But it’s like an infected wound.  What’s better - poking repeatedly at the wound so it becomes even more inflamed  and infected, or providing antibiotics, which can have side effects, but will clear up the infection in the long run?

“It’s all a big hoax!” they say.  “Big Pharma and all of that!” Well, I’m here to tell you that I don’t give a flying fuck about Big Pharma and whether or not the pharmaceutical industry is looking out for patients’ best interests.  All I know is that medication is the only thing that made me feel like a human being again.  And that is certainly NOT a hoax.

Then they want to know when you’re getting OFF the medication.  Even doctors will sneak it in, mentioning tapering off as soon as they think they can get away with it.  Forgive me, doctor, but I’m doing so well on medication.  Ever heard the saying “If it ain’t broke, don’t fix it”?  Well, I implore you, please don’t try to fix me, because I don’t need fixing.  I am happy on medication.  Happier than I was when I wasn’t on medication.  Why, then, do you seem to want to deny me my happiness?

If I need a little white pill to be stable, so what?  If it’s a crutch for me, so what?  It enhances my quality of life, just like my real, physical crutches do.  Would you rather I was curled up in a ball sobbing all the time, like I was before the medication?  That doesn’t bode well for taxpayers.  With medication, I can go out and be a productive member of society.  Isn’t that what society wants from me, and for that matter, everyone else?

And this, ladies and gentlemen, is why I’m wary of disclosing that I’m on psychiatric medication.

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The Trifecta of Spoons

I’m sure you all know by now of my deep, undying love of the Spoon Theory by Christine Miserando.  In recent months and years, I’ve expanded my own, personal definition and application of the spoon theory to include three parts:physical spoons, cognitive spoons, and emotional spoons.
Physical spoons: Physical spoons are the spoons used for physical tasks - walking, standing, writing, carrying something, showering, etc.  As a person with CP, these tasks take a lot more energy than they do for someone without CP, and therefore I have to be very conscious of my physical spoon count.

Cognitive spoons: Cognitive spoons are the spoons required to think and produce a coherent output of words, whether that’s in speech or writing.  Cognitive spoons are required to write long blog posts like this and organize them in a manner that makes sense, as well as writing other things like poetry or fiction.

Emotional spoons: Emotional spoons are used up when I’m really, really feeling something.  My mental health issues, anxiety and depression, both eat up a lot of spoons.  Talking to friends who create a lot of drama also takes up a lot of emotional spoons, spoons which I can’t always spare.

These three categories of spoons overlap and intersect in a variety of ways.  For instance, speaking verbally takes both physical and cognitive spoons.  It takes cognitive spoons to put together the words I want in my head and make sure they come out the way I want them to.  It takes physical spoons to make the words come out of my mouth clearly and without stuttering.  And the lower I get on spoons, the harder it is for me to do these things.

And when I get low on one type of spoon, I tend to borrow spoons from the other spoon areas.  Which means if I’m doing a presentation, I will do much better if I am able to sit.  My thoughts will be clearer and I will be able to express them better if I am not using up spoons by standing, a task which is very hard for me to do.  There are three types of spoons, but they are very heavily influenced by each other.

When I say I’m exhausted or out of spoons, I may mean physically.  I may mean cognitively.  I may mean emotionally.  Or I may mean all three.  Either way, it’s a signal for you to back off and give me some space to rest my body and brain for awhile.  If I don’t want to talk to you, it’s nothing personal.  It just means that I can’t handle the toll on my spoon count right now.

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On Gratefulness and the 22nd Anniversary of the ADA

22 years ago, the law that feeds my existence was signed into law.  Two years later, I would be born, and therefore would spend my entire life under the protection of that law; the law which allows me to go to school, use public transportation, go shopping, and generally live my life to the fullest.  I am happy that I have never had to suffer in the dark days pre-ADA.  I am proud of my brothers and sisters who came before me, who fought for this law so that I, and all the generations of disabled people after me, would be free of the injustices they faced daily.  I am ashamed that I still taste the bitterness of ableism day after day.  But one thing I am not - and never will be - is grateful.

Grateful implies that I should be thankful for human rights, rights that others take for granted. No one has ever been kicked out of a restaurant for being non-disabled.  But many, many people pre-ADA and even sometimes today, have been kicked out of restaurants for being disabled.  Should we thank each and every restaurant owner we meet for not kicking us out of their fine establishment?  Of course not.  We should expect the same level of respect and service given to everyone else.  Respect and equality - for all people - should be the rule, not the exception.

Grateful implies that people are doing me a kindness by treating me like a human being, by allowing me to live out in the open and intermingle with the “normal” people.  And this is so often where disabled people run into trouble, being accused of “biting the hand that feeds them” and not being properly grateful for the services they receive.  This sort of behavior reeks of condescension, expecting us to “mind our manners” and “say please and thank you” like naughty children.  And we say it, even when the services are sub-par or even outright abusive, because we are always mindful of the fact that when you depend on the services of other people in order to exist, those services could easily be not provided at all.  I will not be grateful for common courtesy and basic human decency.

So I will not say thank you to the ADA today.  Instead, I will turn my gratitude to those activists who recognized injustice when they saw it, and fought for us to get the rights that we have always deserved.  I will revel in my pride.  And on Saturday, I will celebrate our culture, our history, and our law in Philadelphia, among so many others who are united in our vision of justice for all - no strings of gratefulness attached.

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Being Disabled in Public

So I mentioned in a previous post that I had the privilege of attending a national vigil for people with disabilities who have been murdered by parents or caregivers, back in March.  What I didn't mention was the adventure that ensued after the vigil.  My friend Lydia, of Autistic Hoya, escorted me around DC because I had absolutely no idea where I was going.  On the way back from the vigil, we encountered an extraordinarily ableist and frankly, just plain rude employee of the DC Metro (DC subway system), who harassed us and repeatedly accused Lydia of being drunk. 

Lydia recently posted about the experience on her blog, because it's taken this long for her to laugh about it.  If you've ever wondered why we are so adamant, if you've ever thought that no one really gets discriminated against for being disabled, you need to read this.  This is what we, as disabled people face by being disabled in public.

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Sign my petition demanding that Urban Dictionary remove their ableist definition of CEREBRAL LOLSY and implement a policy of removal for all prejudcial content on the site!!

Urban Dictionary's definition of CEREBRAL LOLSY is cruel, bigoted, and misguided.  Please sign my petition and share with all your friends and networks!!

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Help! (I Need Somebody, But You Do Too)

Today, my friend Savannah posted something on her blog, about how she has trouble spelling, remembering numbers, etc.  And she mentioned that she embraces that she needs a copy-editor for some projects.  I commented on her post when she posted it to Facebook, saying that I'd be happy to help if she ever needs a copy-editor.   She thanked me.

There's a little twist to this story, though.  Savannah is Autistic and has various other disabilities, including learning disabilities.  Whenever you throw disabilities into the mix, people are apt to praise the helper above and beyond for being so patient and caring and saintly.  Even the helpers themselves tend to get offended if they think we're not properly grateful for what they give us.  We, the passive disabled people, are expected to fall at the feet of the angels so kind enough to help us, and express profound gratitude.  Even if that "help" isn't helping at all.  Even if that "help" is making it worse.

Let me make one thing clear:  I don't help my fellow disabled people because I'm looking for accolades.  I don't do it out of some twisted sense of duty, of helping the "less fortunate".  I do it because they're my friends and I want to.  Simple as that.  And I expect my friends to help me for the same reasons.

There is a certain quiet dignity to "cripples helping cripples" as I call it.  There is no shouting, no neon sign calling attention to the helpful act.  When a person needs help, another person helps, without fanfare.  Everyone involved does what they need to do, without expecting a cookie for it.  Everyone recognizes their own strengths and weaknesses, and everyone fits together, making up for where another may struggle.

I've been a cripple helping cripples since before I could put a name to the feeling, since before I knew that we as cripples are perpetually accused of not being "grateful" enough.  I started going to a camp for physically disabled children when I was thirteen years old, and as one of the more mobile campers in my bunk, I started helping my bunkmates whenever and however I could, just because I wanted to.  For seven years, I earned the nickname "Junior Counselor", and every girl in that bunk knew that if they dropped something on the floor that they couldn't reach, needed someone to pull their covers up when they were in bed, or required a change of batteries in their CD player, they could call me.  And vice versa, when I needed someone to tie the strings on my bathing suit, or needed someone to lean on getting up from the floor, my fellow crip girls had my back.

I've only experienced that feeling of mutual respect and cooperation once or twice in an "inclusive" setting, with non-disabled and disabled people working together as one.  One of the strongest memories of that feeling I have is from January 2010, when I was invited to attend a National Youth Inclusion Summit to create what eventually became known as the I Am Norm campaign.  The Summit brought together nondisabled and disabled youth from around the country to create a campaign for inclusion.  But the inclusion that weekend extended far beyond the official creative process.  With scarcely a word, we all took over for each other, pitching in where we could and accepting help from someone else where we couldn't.  In less than 48 hours, we pushed each others wheelchairs, carried each others breakfast plates, and generally helped each other out, not as caregivers, not as parents or teacher's aides, but as colleagues, comrades, and friends.  We didn't expect anything in return.  We didn't feel obligated to provide anything.  We did it because we wanted to.  To this day, that is my litmus test for inclusion.  You can stick nondisabled people and disabled people in a room together, but it isn't real inclusion, true inclusion, until the two groups see each other as equals and offer mutual respect and cooperation.

I wish that feeling was widespread.  I really do.  And I will do anything in my power to make that happen, make worldwide, authentic inclusion a reality.  But for now, I seek that respect and collective access* that I so desperately crave in crip-dominated spaces.  Sometimes, it even takes me by surprise.  I forget that people with such diverse and different disabilities all know that concept, on a instinctive level, of cripples of helping cripples.  Sometimes, even when our community is mourning, we unify to mourn together, and to help each other.  I had the privilege to attend a national vigil in Washington DC, mourning people with disabilities who have been murdered by parents or caregivers, in late March.  The vigil was candlelit, meaning that at one point during the vigil, all the attendees were encouraged to take a small tea candle and light it in solidarity.  With my poor motor skills and hand-eye coordination, I could see this going very, very badly.  I told Savannah as much, and without batting an eye, she offered to light my candle for me.  With her help, I was able to participate fully in the vigil.  She helped me, and now I'm helping her.  As friends.  As equals.

Help should never be onesided.  It should never be withheld or deliberately misapplied as punishment or threat. Help should be like a river, flowing freely in both directions.  Because disabled or not, everyone needs help sometimes.  I know I do.   Don't you?

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*If you want to help an awesome group that follows these very principles, check out Creating Collective Access.  They're a group that is dedicated to making the Allied Media Conference more crip-friendly and accessible for all.  In their own words:

"We are building on past work at the AMC  to create a sustainable model for crip-led, community-supported access. By building relationships, care, crip/disabled solidarity and solidarity with allies we are empowering those who have been traditionally marginalized, especially queer and trans* people, women, and gender non-conforming disabled/chronically ill people of color. We are resisting the individualization of access in movements and envisioning new ways of building community and being in movement spaces."

But CCA needs your help to get the AMC this year!  Check out their indigogo page and donate if you can!  Help make collective access happen!

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