[diversity-talk] Excuse me, but this is so not okay

[Kai Krueger]

Hello everyone,

first of all, I hope I won't inflame the situation any more with my
email. I know this is an incredibly sensitive topic, particularly to
those directly effected as it can be very stressful and emotional.

Secondly, I am sorry to hear about the accident and hope the TBI is as
"mild" as possible.

Most people can (to some degree) imagine what it is like and how it
effects one to e.g. loose a leg, be in a wheelchair or even to be blind
or deaf. With neurological conditions however it is very different. It
is near impossible to truly understand how a neurological condition
effects someones behaviour, perception and understanding of the world.
Sure, with a lot of experience one can rationally start to predict how a
person with a certain condition will behave and what he or she does or
does not find particularly difficult. But I don't think one can really
understand what it feels like to the actual person effected.

Furthermore, with the brain being such a delicate, complex and self
adapting organ, pretty much every person's condition will manifest
itself in somewhat different ways. And so again it makes it very
difficult to grasp what a condition really does mean to the individual.

Now to Serge's and Betsy's criticism of traumatic brain injury not being
the same as a condition like Autism or Aspergers: Sure, as said above,
every neurological condition is different to the next and so yes, TBI
(traumatic brain injury) is nothing like Autism or Aspergers in the
details, but that does not mean that either is more or less debilitating
than the other or that either don't need to be considered when talking
about diversity and inclusion.

Nearly any form neurological condition lies on a spectra from
comparatively mild effects on day to day life that can be worked around
to pretty much making any form of "normal" life impossible.

I obviously do not know any detail of Alyssa's TBI and thus can only
speak about TBI in general, but depending on the severity and area of
the brain affected by the TBI it can have very significant consequences
on every day life. Also depending on the area of the brain damaged, it
can either lead to very specific (and often very puzzling) deficiencies
or more general issues.

Quite a bit of our general understanding of how the brain functions
comes from studying people with brain lesions, often due to TBI, because
of the profound consequences it has on a persons life.

I do not want to judge what is more or less difficult for a person, to
have lived with the consequences of a condition present since birth for
all their life, or for someone who suddenly goes through a dramatic
transformation and also having to live with it their rest of their lives.

So coming to the point, I would like to ask everyone to

1) Please do not judge each others neurological conditions and who is
affected more or less. Or who deserves the term neuro-divergent more or
less. Please just instead try an let us all work together  and make this
community as inclusive and respectful as possible and develop guidelines
to help others understand the various forms of diversity and what is and
is not considered hurtful/inappropriate to help prevent unintentional
inflammation and sanction the intentional hurtfulness.

2) Please everyone also consider how emotional and stressful this topic
can be to those effected and that this will perhaps inevitably lead to
some heated emails sent. So it might be good if everyone tries to just
ignore some of the overly emotional and partly hurtful words and don't
lash back out. Instead just try and be as calm and rational as possible
and point out your point of view in an as descriptive way as possible.

Kai


On 12/01/2014 08:20 PM, Betsy Kolmus wrote:
> Hi all -
> 
> This is Betsy Kolmus, I'm an autism acceptance advocate and I have an
> Aspergers diagnosis. I heard that there's been some discussion on this
> list about traumatic brain injuries and autism, so I came over to see
> what was going on.
> 
> Alyssa, I am so sorry to hear of your injury, and I hope that you
> recover soon. I'm sure it hasn't been easy for you to cope with what's
> happened. If you would like, I can try to help you get in touch with
> people who can provide you with additional resources and support while
> you adjust to your new daily reality.
> 
> That being said.
> 
> Saying that sustaining a brain injury is anything like living your
> entire life from birth as an Autistic is flagrant, outrageous,
> trivializing appropriation. I personally had the added pleasure of being
> undiagnosed for the first 28 years of my life - fired from every job for
> not being able to pick up on and play along with the unstated social
> rules in the office, ostracized from every group of friends I could ever
> manage to overcome my social anxiety and introversion and reach out to,
> mocked and tormented by people who can't tolerate difference, struggling
> with anxiety, depression, self-injurious behaviors, intrusive suicidal
> thoughts, echolalia, compulsions, painful sensory processing issues...
> 
> Do you have any idea what it's like to have every single person in your
> life tell you that you're brilliant, that you have incredible talents,
> amazing potential, only to have that potential and that lively
> creativity slowly beaten out of you by a series of fuckups that you
> can't understand why you made?
> 
> Do you have any idea what it's like to be incredibly raw to sound and
> smell and touch and emotion and forced, again and again, for years, to
> immerse yourself in the pain because you need to "toughen up"? Do you
> have any idea what it's like to not be able to feel your own body
> anymore because you've become so withdrawn into your imagination that
> you're hardly there anymore? Do you have any idea what it's like to come
> out of that concrete shell and realize that there's a whole world out
> there, human connections, worthwhile work, that you've been missing out
> on for decades?
> 
> So.
> 
> Stop equating a brain injury sustained in adulthood with the experience
> of living your ENTIRE LIFE in a world that wasn't made for you.
> 
> 
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