Friday, 2 August 2019

Labelling the issue not the person.

I still don't think disabled people or people with a disability have got it yet. Their systems are developing new labels as we write, more logos to define us, more 'emoji's',  more awareness of our issue focusing ON that not us. The reality is awareness has totally failed and the various areas and systems we use or encourage HAVE to highlight the issue and the person with it, including how it affects them, which kills any social model of course. 

So in direct conflict with the suggestion of this poster.  No one offers help, support or money to people with a positive outlook it suggests you don't NEED help.  Misery sells ask any of their charity fundraisers.   The conflict of social and medical images rambles on within disability and deaf communities. To raise awareness they need to highlight the negativity of much of it, and challenge those deaf and disabled who want that focus removed.  No deaf I know approves of fundraising in their name for 'support' they do approve if it means their strive for culture sign or community gets it.  The deaf are not beggars no matter how it is hyped up, they are, however, first-rate opportunists and know the culture and sign sells.  The reality remains mainstream won't fund areas they  'see' as managing fine thanks without it and making that point determinedly.

The deaf and disabled also realise the help and support they DO need, also requires them sitting on the fence in many respects.  Disabled for this, not disabled for the other etc.  Mostly centred around finances and funding. Cleverly the deaf state 'this is to support our culture, it is NOT to address our hearing loss, (which isn't an issue with us, you are the problem.).'  It's a matter of time before mainstream realises this suggests the funding they get is not being used for its primary purpose, alleviation and inclusion.  The fact the vlog uses a disability image also undermines any message within it.   It's just one logo replaced with another, NO labels of any kind mean success.

Disabled par se, don't HAVE a real community as such, they do have a loosely defined campaigning direction.  The deaf suggest they do.  Lots of diversity, lots of multiculturalism and dedicated areas,  but, no community as deaf understand it.  The whole thing is one long confusion.  If you are a person first and not your issue, then stick to the script.  For the record, the deaf RELY on their stereotype and labelling, indeed re-invent them, again and again, to fit in with current inclusive trends, but not really following the inclusion itself.  This would mean much lower profile being attached to culture.

Deaf Community Day (Maidstone)

Pretending to hear saved my life..

pretending to hear
I know the way it feels when a hearing aid shatters between your teeth. The crunch of plastic shell. 

Gritty springs and screws rolling across the molars. Standing in the privacy of my bedroom, the pre-teen version of myself spat the remnants into a sock and tucked them into my chest of drawers. I don’t remember my exact age. Maybe 10, or 11. But old enough to recognize the complexities of being hard of hearing in a world split between the hearing and the deaf. 

That was the day I began pretending to hear. Seeking a cure My mom rejected overtures to send me to the Oklahoma School for the Deaf, even though it was quite close to where we lived. She said I would grow up in a hearing world, and I needed to learn how to live in one. I think she made the decision because she couldn’t bear the thought of being separated from me. 

Life with disability not a linear path by Tiara Blue Mom, not yet diagnosed for bipolar disorder with psychotic tendencies, already had issues with paranoia. She viewed my diagnosis as a threat, an excuse for others to take her baby from her arms. A deeply religious woman, she tried to cure me. “The power of Christ compels you!” she’d cry out. Then she’d hock and spit on her fingertips and wedge them in my ears. This was supposed to mimic Jesus’s miraculous healing of the blind man. My younger sister, Starlet, called it, “Christ’s wet willy.” 

Mom tried variations of the spit cure. Plain old spit. Spit mixed with olive oil. (I drew the line at her more literal translation of the Bible’s text, mixing spit with dirt.) And each time she poked her wet fingers in my ears, I remember praying, Let me stay just the way I am. Being deaf made me special. On a school playground where I had been invisible, it made me seen. At 10 years old, when I had bit into my hearing aids and destroyed them, I wasn’t motivated by shame, but rather, practicality. 

I had gotten glasses for near-sightedness. (Starlet, ever the acerbic 6-year-old, loved to call me the “knock-off Helen Keller”.) The combination of the glasses and the piggyback hearing aids pinched my ears, making the skin raw. So I chewed up my hearing aids. I didn’t resent my deafness. I resented the remedy. The magic bullet I wouldn’t get another pair of hearing aids until I was 15 years old. Dad’s Tricare paid for them, which the audiologist labelled as “state-of-the-art machinery.” 

I wish the audiologist had just skipped the whole “state-of-the-art” pitch, because that second time around, everyone expected a magic bullet. Suddenly, I was expected to hear every God-blessed word uttered even though I hadn’t heard complete language over half my life. Even with the addition of hearing aids, I felt like a cryptographer trying to cypher a code, absent a key. Imagine speaking to a person, but every third letter is removed from the conversation: “I d_ no_ kn_w w_at _o d_ ab_ut _hi_ jo_. I r_al_y ne_d t_e m_ne_, bu_ I ca_no_ af_or_ th_ ga_ un_il _he _he_k c_me_.” This is my life. 

Every frigging sentence, a puzzle. I try to identify the missing pieces. Click them in place. Make some semblance of a coherent picture. The result? I can never relax. Every interaction is a series of mental gymnastics, in which I am always one beam jump from smashing into my face. But, as a young person, I didn’t know how to explain this.