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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Just because it's ableist, doesn't mean it's bad.

I see the word ableism getting flung around a lot lately.  Most of the time, it’s justified ableism.  But people toss it at others like a knife.  Like a weapon.  Like it’s a word that’s meant to hurt.  And then the recipients, the one who are being informed of their ableism, get offended and very hurt, because the connotation associated with all these -isms is that they’re bad, very bad and if you’re an ableist, then you’re a horrible horrible person who needs to go sit in a corner and shut up.

Ableism doesn’t mean you hate disabled people.  It doesn’t mean you’re an evil person.  It doesn’t even mean you think disabled people aren’t capable of anything, although all of those qualifiers can certainly fall under ableism.  Ableism is the system of oppression that faces disabled people in our society, a system that marks disabled people as inferior and most importantly, other.  It doesn’t have to be done with malice to be ableism.  It doesn’t even have to be done with conscious intent.  Ableism is separating society into us and them, sequestering disabled people into this category of not-entirely-human, mythical type people that are: a) so sad and tragic and/or b) sooo inspiring!!

Ableism is dictating that there is a right, a ”normal” way to be, and disabled people aren’t it.  Ableism is merely “tolerating” us instead of accepting us for who we are and embracing the differences that make us unique.  Ableism is preaching that diversity makes us stronger, and then conveniently leaving disability out of that equation. Ableism is believing that we have a lesser life, that we suffer, because we are disabled.

Ableism is “otherizing” us.  Ableism is using language that really has been used over generations to attack disabled people, to tell us that we are not normal and as such, we are less than human.  And ableism is using that language without any idea what it has done, how many people it’s hurt, because society doesn’t want us to know how, in a society that’s supposed to have conquered discrimination the way we conquered countries, millions and millions of people were systematically threatened, bullied, and slaughtered.  Ableism is never speaking about disability history, never even knowing that there is a history, because our history is not considered history.  At best, our struggle for rights is largely viewed as a cute little adolescent rebellion, complete with whining protests and stomping of feet.  At worst, it is completely wiped from the collective consciousness, because the world doesn’t want to see us, hear us, acknowledge our existence beyond using us, our stories, as a tool to make the privileged feel better about themselves.  Ableism is using us as scare tactics, as examples of what you don’t want to be.  Ableism is assuming that our lives are inherently less worth living than yours.

Ableism is having only one definition of disability, and only viewing a disabled person as one way.  Ableism is calling the rest of us fakers and benefit scroungers, because we don’t fit your definition of disability.  Ableism is cutting the services that we need to survive.
Ableism is putting disabled people in a box, a box that is never opened and has very clear edges.  Ableism is never recognizing that you or someone you know may be disabled, because they have a productive life.  Ableism is thinking that it is okay, even commendable, for disabled people to want to die, because our lives are not worth living.  Ableism is killing us before we have the chance to live, all because of a pre-conceived notion of what our lives will be like.

Ableism is warping the public notion of an entire group of people as “so smiley and happy all the time!” Ableism is reducing us to a caricature of human beings, painting us all as one shade of a color, when in fact we are as diverse as any other group of people.  Ableism is dividing a diverse community into “high functioning” and “low functioning” and deciding that only those who fit your idea of “high functioning” can possibly have anything to say.  Ableism is defining disability as solely an unfortunate happening, and not recognizing the social and cultural factors that oppress us.  Ableism is denying that you have privilege, that you can feel safe, because you are nondisabled.  Ableism is a world that is centered on the nondisabled, instead of being welcoming for everyone.  And truth be told?  Ableism is claiming that there is no ableism.

You don’t have to know that ableism exists to be an ableist.  Nor does being an ableist mean that you are a horrible, soulless person.  Being an ableist just means that you have privilege you need to acknowledge, and patterns of thought that you need to change.  So what should you do if someone calls you out on your ableism?  Take a step back.  Reflect on your privilege and what you said or did.  Recognize why someone may take offense at that.  If you don’t understand why it’s ableist, don’t start pointing fingers at the other person, claiming that they are oversensitive.  Ask politely, and think on their answer.  Apologize, and learn a lesson.  You are not evil because you are an ableist.  You are simply an ableist.  So take the opportunity to learn about your own privilege.  Hopefully, you’ll come away knowing more than you did before.

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Why the abuse of disabled students needs to stop (and it needs to stop RIGHT. NOW.)

There has been a disturbing flurry of incidents breaking out lately about school staff abusing disabled students.  The latest one involves an autistic student being PUT INSIDE A DUFFEL BAG with the drawstring pulled tight OUT IN THE HALLWAY.  With gym balls.  Like he was no better than a piece of gym equipment.

You know what the most disturbing, terrifying part of all these abuse cases is?  It's not that they're happening in the first place, although that's certainly disturbing enough.  It's that these acts are passed off as being okay.  When this mother came to pick up her son and found him in a duffel bag, an aide was "standing by".  The school told her it was a form of therapy.  And they "told her it was not the first time they had put him in the bag".

Just casually - "and oh yeah, we put your son in a bag where he could've suffocated for THERAPY".

This is by far not the first case like this, and I shudder to think of how many more abuses are committed under the guise of therapy around the world.  Committed in the name of rehabilitation, in the name of making us magically stop being different and making us normal.  Does the world really hate us, fear us and our differentness that much, that kids' emotional and physical well-being would be sacrificed in the name of normality?  The answer seems to be yes.

There seems to be this prevailing attitude that disabled students - and especially those who receive segregated services like segregated transportation, therapy, etc. - are some sort of subspecies that are exempt from deserving respect.  Therefore school staff and others that work with the students can screw them over however the hell they want.  They're just bodies, vegetables.  They don't need to know if they're going to have the same aide or bus driver from day to day.  They don't need to get to school on time.  They don't need or deserve to be in class, because after all, it's not like they're actually learning anything.  They don't need or deserve to have an aide who does their job, without abusing the student or making the student feel like a burden.  And these students certainly don't deserve an apology when someone wrongs them.  I've seen this attitude in practice myself countless times, and it can lead to incompetence, neglect, and outright emotional and physical abuse.

Unless we stop this ableist attitude in its tracks, unless we embrace the radical notion that people with disabilities are - *gasp* - people, human beings, just as worthy of equality and respect as anyone else, this awful abuse is going to continue.  It's going to continue, because society makes us believe that if you're not perfect, you're not anything.  You're nothing.  And since you're nothing, people can do whatever the hell they want to you and get away with it.  How many more kids have to be traumatized, how many more kids have to be hurt, how many more kids have to die before this becomes unacceptable?  Before no one gets away with these acts, or better yet, does them at all.  Before the world is as outraged as we as activists, advocates, disabled people are.  Before parents can send their children to school - all their children to school - and know that each and every one of them is being treated with equality, dignity and respect.  Before no child is afraid of going to school.  I hope, for my sake, for the sakes of all the disabled children who came before me and all who will come after, that that day is within our reach.

Click here to sign the Change.org petition demanding the end of abuse of disabled students in schools, created in response to the duffel bag incident.

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Visible vs. Invisible

Warning:  This is going to be a long, probably discombobulated post in which I word vomit a lot of thoughts I have on "visible" vs. "invisible" disabilities.

There's been a lot of talk 'round the disability community lately about "visible" vs. "invisible" disabilities.  From the way some people talk, you'd think you could take a big fat Sharpie marker and draw a thick black line separating those with "visible" disabilities from those with "invisible" disabilities.

The issue of "visible" vs. "invisible" disabilities is kind of like the issue of "high functioning" vs. "low functioning".  What label gets placed on you depends on who is doing the labeling and what situation you're in.

Take me.  Depending on the day, time, situation, and any combination of factors, I a) walk without aids at all, b) walk with forearm crutches or c) use a wheelchair or motorized scooter.  So does that mean I bounce back and forth throughout the day, going from visible to invisible and back to visible?  If I'm walking without aids, but no one sees me, does that still mean I'm "invisibly" disabled?  (And while we're on the topic of existential questions, if a tree falls in the forest and no one is around to hear it, does it make a sound?)

What about someone with epilepsy?  Most of the time, they may look perfectly "normal" and thus be "invisibly" disabled.  But when they're having a seizure, especially if it's a grand mal, that's sure as hell visible.  Or someone with mental health impairments and self harm issues?  Persimmon Blackbridge, in the documentary, Shameless:  The Art of Disability, sums this up as she rolls back her sleeves to expose webs of scars from years of self injury:

That's the thing about invisible disabilities - wear a long sleeve shirt, you're fine.

When Persimmon is wearing a long sleeved shirt, she's "invisibly" disabled, but as soon as the scars come out, that's not invisible anymore.  This phenomenon of "invisible" disabilities is such a fluid concept that it's impossible to pin down who, exactly, qualifies as "invisibly" disabled, just as it's impossible to pin down who, exactly, is disabled in the first place.

And even if there are people who can be neatly categorized into "visibly" and "invisibly" disabled, what does that accomplish, besides dividing the disability community even more than it's already divided?  Just because I use mobility aids doesn't mean you know anything about my disability or how it affects me.  And it doesn't mean you have a clue about how to accommodate me, either.  And it shouldn't.  You know what the best way to figure out how to accommodate me is?  Ask me.  You know what the best way to figure out how to accommodate someone who doesn't show any outward signs of disability is?  Ask them.  There's no difference in the way you should treat someone.

And neither group has it "easier", either.  I've experienced it from both sides, both with my physical disability (and it's resulting oddities in my body) and my mental health impairments.  If you're more "out there" and visibly disabled, you get outright pity and ableist comments.  If you're less visibly disabled, and need or choose to disclose your disability, you're accused of "faking it", or get similarly skeptical reactions, and you STILL get pity and ableist comments once people find out.  Society pushes and indoctrinates people to "normalize" themselves and invisibilize their disabilities as much as possible, and then when they've expended time and energy and emotions jamming themselves as much into that "normal" mold as much as they can, they're accused of being fakers and benefit scroungers.  It's not "better" to be one or the other, if such defined categories even exist.  It's a different experience - just like all experiences of disability are unique.  People with the same/similar impairments may relate to each other, and there is often a nice tribe-like feeling when you're with people who have the same impairment as you, but it's still a very individual experience.

In conclusion:  The categories of "visible" and "invisible" disabilities are murky, at best, and only serve to further divide a very diverse and divided community.  So let's all stop meebling about how hard it is to be visibly/invisibly disabled and how the other group has it so much easier, ok?  Because it sucks to be visibly disabled sometimes, and it sucks to be invisibly disabled sometimes.  And it can also be MIND-BLOWINGLY AWESOME to be visibly disabled, and it can also be mind-blowingly awesome to be invisibly disabled.  They are both equal parts suckishness and awesomeness, just like any disability.

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Sweet Is the Melody

"Sweet is the melody,

so hard to come by

It's so hard to make every note bend just right

You lay down the hours and leave not one trace

but a tune for the dancing is there in its place."

-Sweet is the Melody by Aselin Debison 

Hey hey, it's time for the October Disability Blog Carnival!  Considering it's snowing where I live, it doesn't feel much like fall, but nevertheless it is and Halloween is just a few days away!  I'm your friendly neighborhood spaz, here to host this lovely carnival with the theme of sweet is the melody!  Get swept up by the music.....

Ettina over at Abnormaldiversity presents us with what I like to call a written music video to the Dixie Chick's Not Ready to Make Nice.  Her writing is incredibly clear and descriptive and I could visualize the entire video in my head.  I hope that someday someone makes that video for her.

Sharon at After Gadget writes a poignent post on how one song - Don't Leave Me This Way by the Communards - helped her cope with the death of her beloved service dog, partner, and friend, Gadget.  I've never heard the song (probably because I'm a young'un!) but I can definitely see how the lyrics can connect with someone who has lost somebody important in their lives.

And Elizabeth at Screw Bronze writes about writing a happy song, about disability and ability clashing and coexisting, about not fititng into society's boxes.  As someone who is also disabled and gifted, as someone who doesn't fit neatly into disability stereotypes,  I can relate a lot to this.

Jen at SuicidalNoMore tells a beautiful story, of how a simple CD Discman brightened someone's day.  Personally, I could not live without my Ipod and it helps me immensely when I'm going through an anxiety/depression episode and don't want to talk to anyone.  Music gives me something to hold onto.

And what about me?  I fully intended to write a post for this carnival, since music is something extremely important to me.   I play music almost constantly - if I'm on my computer, I will have Itunes or Pandora or Spotify open.  I fully intended to write a post, and then everything came crashing down.

Let's back up a little.  Last year was the most horrible year of my life.   I went away to college for the first time and became absolutely, postively terrified.  I would cry for hours on end and as soon as I'd stop, it would be like someone flipped a switch and I'd start all over again.  I went on like this for months until I finally got help and was put on anti-depressants.  The medication finally made me feel like myself again, and although I still struggle with my anxiety and depression, for the most part, I'm a functional human being again.

Last year, when I was going through all of that, I put together a playlist of "Strong Songs".  Songs that reminded me of who I was and who I wanted to be.  Songs that reminded me that I was a strong, beautiful person, no matter what society and my own brain told me.  Songs that brought back happy memories, memories of being with the people I care most about.  The playlist grew and grew, and now it's up to 110 songs.  It's not over yet, either.  When I find a song that I feel belongs on the playlist, I'll add it.  And when I'm having a bad day, when I'm crying and crying and crying, I put on my strong playlist to encourage me to be strong and get through it.


This past week was probably the worst anxiety/depression episode I've had since I was put on medication.  I couldn't stop crying and I didn't even know why I was crying.  I was curled up in a ball just wishing the feeling of intense sadness would go away.  It's the reason why this carnival is slightly late going up, although now that I'm looking at the call for submissions, I must've anticipated this, since I didn't set the carnival date til the 1st of November.  My friend Dani, who has mental health issues of her own, introduced me to this great song by Diana Degarmo called Emotional.  When I was going through my episode, I had this song on repeat and was singing through my tears.  So my choice of theme was very appropriate, because music helped me through my mental health issues last week.

Here's the link to my strong playlist on Spotify, not all the songs are on there, regrettably, because of Itunes/Spotify compatibility issues, but you get most of them.  Feel free to take this playlist and make it your own! 

Even if you didn't participate in the carnival this month, leave your favorite song in the comments.  What song helps you get through the ups and downs of disability?  What song or album do you have on repeat at the moment?   I know I'm not the only one who knows the truth of that old saying, music soothes the savage beast.

"Sometimes I feel like crying
Laying down and dying
That's when I need you
Laughing's always easy, but sometimes I'm just scared you'll leave me
That's when I feel emotional."

-Emotional by Diana Degarmo

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