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I am wondering whether anyone has looked at the trajectory of children born with disabilities,...

1- It is most assuredly not lost on us that prenatal tests exist to determine whether unborn babies have potential disabilities. While we have lived/worked/given back to our communities as best we can, we are 'slapped in the face' by the overwhelming assumption that our existences are, indeed, largely problematic. Maybe we need to consider "society had a prenatal test to, ahem, not have babies like you, but..." as an 'adverse childhood experience' starting during pregnancy, 

2- Despite children with disabilities having a statistically higher chance of experiencing child abuse (from caregiver), look at all the inspiration porn-type blogs that tout special-needs-mama power... (YES most moms are loving! But more caregivers of kids with disabilities are ALSO suspected of child abuse/neglect (check child abuse stats!) ...  this is inherently downplayed.). So while we SEE evidence of adoring caregivers to all these passive children with disabilities, who is noticing the increased likelihood that some parents neglect and/or abuse their children? Who has written about the disconnect between the assumption that all 'special needs parents' exude acceptance and love - and the harsh reality of child abuse statistics that complicate these very assumptions? Who hears these stories?

3- Children born with disabilities face many daunting challenges early on...

(1) Attachment - parents are given the analogy of "welcome to holland" (where mom expected she was landing in �� Italy, only to find out �� She landed in Holland, instead. Imagine being regarded as the reluctantly accepted  "windmill" instead of the much anticipated "Rome"? Imagine hearing the only stories of your early years are the struggles of feeding you, time in hospitals, stress, not knowing how retarded you were, etc? Wouldn't you rather know your entrance into this world was a time of welcome vs. fear?  YES! It WAS stressful! But the children need to know THEY are deeply loved!!! Whole! Even with all those problem they came with, because they had no choice in this "package deal".

(2) The medical procedures... the sense that you only gain worth via getting "fixed". Your body gets fixed but your heart/soul are never deeply 'known'.

(3) The "no talk". What if no one ever asks you, in an empathic way, what its like having a disability,  and listens deeply?  No one works to address the emotional distress of being different? This changes over time. It's as though "ableist privilege" takes away the concept that 'difference', when paired with "no talking" = isolation. This is something sees throughout the trajectory of people's lives. It is emotional abuse via suctioning out a way to listen/hear/talk about 'this'. It happens when well-intentioned parents INSIST they will treat you "normal"... and then can't hear the non-normal stuff.

(4) The bullying... The looks that stamp in "WEIRD!" and are made worse when shared and trivialized, denied, ignored, etc. School kids... strangers... fellow employees...

(5) Dating/sexuality... How does one "talk about it" when you can tell in your parents' eyes they see no possibility of dating, marriage, etc., in your future?

4- Within the disability 'community' there is little "community".  Allegedly we are the largest minority group, but who would even know since we are so disparate... each subgroup holding on to its claims of significance? Everyone assumes each category is exclusive of the other, that if you're "here" (with this physical thing) you're not "there" with that mental thing. The problems with this are massive...

(1) The cross-disability reality of having a physical/sensory disability that includes stress/anxiety, etc., from the collection of life experiences unique to "us" (starting with early attachment stuff, then moving on through medical procedures, bullying, inability to sense 'belonging' when "the only one", etc.) is not yet recognized within many specific disability subgroups.  Most organizations are started by parents - most of whom have a vested interest in seeing an ideal "just **now** as a child" vs a real "all" that accepts the stories of adults who may have been affected by "adverse childhood experiences from having this disability _________". The complexities of physical conditions always seems to trump that of emotional distress, even though emotional distress can grow - and literally last through the tragectory of that ex-child/now adult's life. While "we" are seen for having this physical thing, "we" disappear" if we speak loudly to the emotional distress it engendered. Just go look at the many disability-specific nonprofits. They want you to know the warm stories (healthy!) but they don't look at the "all" (the emotional distress that children/adults may feel). Shhhhhhh!!!!! (Not healthy, especially for the children growing up today who DO experience emotional distress that isn't addressed)

(2) Even within disability-specific communities, the same dynamics of "privilege" surface just they do in racial and gender-based systems. Those who have found success with some procedure rank higher than those who didn't. Those who say "I don't consider myself disabled" (while secretly speaking in hushed tones re: anxiety - but of course they 'overcome' it) look down upon those who've admitted to deep or chronic depression, etc., or who regard 'disability' as an internal badge of deep awareness re: the larger experience. So the much sought after support from within the specific disability community Is weakened because it is not as acceptable to talk about the 'bad' and the 'ugly' of disability as it is to talk of 'the good'.  The pain is there but it's harder to talk about.

If the study of ACEs is indirectly linked to Suicide Prevention, then I heartily suggest that we address the emotional distress gleaned from growing up with adversities related to disability and exacerbated by the stress from all this never being examined. There are people out there who've completed suicide, attempted/threatened suicide, felt suicide ideations, gone through enough ECT's to light a small city, taken enough pills to underwrite any pharmaceutical company, paid dearly into retirement for psychiatrists who've never connected two dots... They may/may not be employed, but their isolation stems from a lifelong sense that, at its core, society has yet to welcome them.  They exist. They have existed. They are in your midst and are  nearly mute from years of not being seen. 

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The ray of Hope? Not only for the countless people "out there" who face uniquely individual challenges from growing up with a disability but for YOU in seeing them? The ones most interested in this new thing called "ACEs"? There is an answer. There is a way to envision things... 

START LOOKING AT THE 'RECOVERY COMMUNITY'. These are the folks who deeply get your ACEs for they grew up in them and/or so much more. They deeply get, at the atomic level in their soul, the stuff that researchers and writers can only study, observe, discuss and write about.

I suspect that, on society's continuum of acceptable to OOOH-not-so-acceptable, these folks may be perceived by some as being at the lower end of the totem pole. That's the conundrum, for its only from "down there" that one truly sees the whole picture.

its from within the "recovery" movement that people learn to clearly see one another's life experiences, talk intentionally, and move forward together. We've been deeply down that rabbit hole many only "study". Isn't it only logical that we'd know the way/s out???  Just check out Intentional Peer Support. It's the way to truly, deeply and soulfully connect. Read how it was developed -not in some university think tank, but via lived experiences and sheer grit.

Then check out Mary Ellen Copeland's Wellness Recovery Action Plan. Those within the numerous, disparate physical disability communities can use these two peer training resources as a starting point in figuring out to holistically embrace all within their community. You, as adults with lived experiences that includes all kinds of unique physical conditions,  know the physical differences. Now add in the emotional distress they may engender. Mix with Peer Support. Let the mixture soak awhile. Then use the newfound knowledge as led by those within the disability communities - and you have a peer support movement that can knit isolated, formerly muted souls together in finding mutual strengths.

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Answers come through knowing the questions to ask, then listening to the answers. You know that you're asking the right questions when you are in direct, open, translucent, empowered discussion with those who've gone through the battles you're investigating. You have to work at this... it doesn't come easy to listen to the disempowered among us. But do it - long and deep.

Then listen. Lots of listening. Taking turns even! Learn to intuitively dig for the deepest truths within your community, it is THERE you will find RESILIENCE. Nurture that voice. START HERE. 

 

 

Last edited by Sandy Goodwick
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