Wednesday, May 23, 2012

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!

3 comments :

cynicalbeauty said...

Great post! I was that same girl at camp. What I love about cripples helping cripples is that we respect each other when we don't need or want help. The worst is when people ask if you need help, then ignore you if you say no.

Anonymous said...

I had the same feeling of being treated as an equal when I did my acting job recently. The whole cast was able bodied but never doubted me as an actor. They would help me with physical issues I had because they wanted to and I helped them practice lines because I wanted to.

I also feel it in my dance class with my teacher who has CP like me. There are things he knows about my body that no able bodied person could know and we both help each other.

Your friend,
Margot

Mylinda said...

Interesting perspective, I appreciate your sharing it. I tend to agree with you. Things workk better when we help each other for no special reason other than we want to.