The lost soul inside.

Dark-digital-art-by-David-Ho9

I am,

An open book,

With pages,

Missing.

 

I am,

An old film,

With frames cut,

Out.

 

I am,

An imposable puzzle,

With secrets,

Written on the back,

Of every piece.

 

I am like a memory,

Shattered into so many,

Small pieces,

That no one can ever,

Seem to remember me,

Whole.

 

I am,

An old pocket watch,

Lost in the sands,

Of time.

 

I am a little box,

With feelings locked inside,

But you can’t open me,

Because,

I have no key.

 

I am the kid,

That everyone see’s,

Yet still somehow,

Never seems to notice.

 

I am the child,

That speaks,

Yet no one ever hears,

The words I cry. 

 

I am the flame,

That will soon,

Go out.

 

But for you,

I will use,

The last,

Of my fire,

To keep,

You safe.   

This poem was written by my middle son just a few days ago. I know it has been tough on him growing up as the middle child, anchored as he is,  on either side, by siblings on the Autism Spectrum.

His words say it all and I am so very proud of his  extraordinarily sensitive and caring soul.

“Those of us who are too gentle to live among the wolves”

Artwork by Jennifer Healey

“I am one of the searchers.

There are,

 I believe,

Millions,

Of us.

We are not unhappy,

But neither are we really content.

We continue to explore life,

Hoping to uncover its ultimate secret.

We continue to explore ourselves,

Hoping to understand.

We like to walk along the beach,

We are drawn by the ocean,

Taken by its power,

Its unceasing motion,

Its mystery and unspeakable beauty.

We like forests and mountains,

Deserts and hidden rivers,

And the lonely cities as well.

Our sadness is as much a part of our lives,

As is our laughter.

To share our sadness with one we love,

Is perhaps as great a joy,

As we can know,

Unless it be to share,

Our laughter.

We searchers are ambitious,

Only for life itself,

For everything beautiful it can provide.

Most of all we love and want to be loved.

We want to live in a relationship,

That will not impede our wandering,

Nor prevent our search,

Nor lock us in prison walls;

That will take us for what little we have to give.

We do not want to prove ourselves to another,

Or compete for love.

For wanderers, dreamers, and lovers,

For lonely men and women who dare to ask of life,

Everything good and beautiful.

Are those of us,

Who are too gentle,

To live among,

The wolves.”

Words by  James Kavanaugh

Artwork by Naotahattroi.com

 

“Never let them tell you that silence isn’t beautiful”

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“I read her eyes like paragraphs

And her tears like chapters,

For she didn’t have much to say,

With words,

But rather,

Silence.

And never let them tell you,

That silence,

Isn’t beautiful.

For silence is what happens,

When words fall asleep

And you must carry,

The belief,

That one day,

They will,

Wake up,

Inside of you.”

Words by Christopher Poindexter.

Artwork by Daniela Hallgren.

 

“My body is full of stars that never learned their names”.

Artwork by Carne Griffit

Artwork by Carne Griffit

“I am filled with things and I battle feelings,

I have never wanted to exist inside of me.

I lack too much confidence and I carry,

Too much sadness,

And my body is full of stars,

That never learned their names.

I wear my insecurities,

Like pockets,

And I fill them,

With my fears,

And my hands are growing tired,

From reaching down into them to hold,

The feeling of being afraid.

I am afraid.

Always,

Afraid.

Afraid like chimes,

When the wind lips,

Are sealed.

Afraid like your eyes,

When the stars,

Fall asleep in the black.

Afraid like dreams,

When they realize they are just dreams,

And that reality,

Is that one scar that will never,

Fade away.

I am,

Terrified.

Terrified that the things inside me,

Are the things that will keep me,

From ever finding a home,

Inside someone else.”

Words by Christopher Poindexter. Artwork by Carne Griffit.

23 Things you can take for granted if you happen to be Neuro -Typical with Neuro-Typical children

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1. You can, if you wish, arrange to be in the company of people who share your own “neuro-typical status” most of the time.

 

2. If  you should need to move, you can be pretty sure of renting or purchasing housing in an area, that you can afford and in which you would want to live.

 

3. You can be pretty sure that your neighbors in such a location will be neutral or pleasant toward you.

 

4. You can go shopping alone most of the time,  and be pretty well assured that you will not be followed or harassed.

 

5. You can turn on the television or open to the front page of the paper and see people of your own “neuro- typical status” widely represented (in positive ways).

 

6. When you were told about your national heritage or about “civilization,” you were shown that people of your ilk made it what it is.

 

7. You can be sure that your children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. You can arrange to protect your children most of the time from people who might not like them.

 

9. Whether you use checks, credit cards or cash, you can count on your “neuro-typical behaviour” not to work against the appearance of your financial reliability.

 

10. You can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. You can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, or the inadequacies of  “having a non-neuro- typical status”.

 

12. You can speak in public to a powerful group without putting your “neurological status” on trial.

 

13. You can do well in a challenging situation without being called a credit to your “neuro-typical” class.

 

14. You will never be asked to speak on behalf of all the people in your “neuro- typical” group, everywhere.

 

15. You can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. You can criticize your government and talk about how much you fear its policies and behavior without being seen as an outsider.

 

17. You can be pretty sure that if you ask to talk to “the person in charge,” you will be facing a person of your own “neuro-typical status”

.

18. You can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of your own “neuro-typical status”.

 

19. You can go home from most meetings of organizations you belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of your “neurological status”.

 

21. You can choose public accommodation without fearing that people of your “neurological status” will be mistreated in the place you have chosen.

 

22. You can be sure that if you need legal or medical help your “neurological status” will not work against you.

 

23. If your day, week or year is going badly, you need not ask of each negative episode or situation you’ve encountered, whether it holds “discriminatory” overtones.

Artwork by Sam Drawing

Artwork by Sam Drawing

These are just a few examples of the common everyday things that those of us  who experience Autism, Developmental delays, Brain Injuries, Chromosomal additions or deletions, or who are neurologically different, in any way,  can never  take for granted in our daily lives.

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So the next time you see someone struggling to do that which for you has now become so easy that  it’s taken for granted, take a few seconds before you cast judgement and ask what you can do to help, rather than  hinder, that person’s situation.

Art by Maria Zeldis

Art by Maria Zeldis

A little bit of kindness goes a long, long way but a little bit of understanding goes even further.

Art work by Kate Hannah

Art work by Kate Hannah

List originally compiled using the resources of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, and adapted by me to include and consider the ramifications of the taken for granted actions of those who do not experience any degree of neurological difference.

 

Adapting Peggy McIntosh’s paper on “Unpacking the Invisible Knapsack of privilege” to accommodate and reveal how Neuro-Typicality constructs its own unspoken system of privilege in our society.

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“As a “neuro-typical person”, I realized I had been taught about discrimination as something which puts others at a disadvantage, yet at the same time, I had been taught not to see one of its corollary aspects, which are that “neuro-typical privilege” puts me at an advantage.

 

 

I think “neuro-typical people” are carefully taught not to recognize their privilege, in much the same way that males are taught not to recognize male privilege.

 

So I have begun in an untutored way to ask what it is like to have “neuro-typical Privilege.”

 

I have come to view “neuro-typical privilege” as an invisible package of unearned assets which I can count on cashing in each day, but about which I was ‘meant’ to remain oblivious.

 

“Neuro-typical privilege” is like an invisible weightless knapsack of special provisions, maps, passports, code books, visas, clothes, tools and blank checks.

 

In a sense it affords those who are “neuro-typical” all of the automatic advantages and access to the world that those who are “non neuro-typical” do not have.

 

Thinking about privilege in this way I began to understand why we are seen as oppressive, even when we don’t see ourselves that way.

 

I began to count the ways in which I enjoy an unearned sense of privilege and of how I have been conditioned into oblivion about its existence.

 

My schooling gave me no training in seeing myself as an oppressor, as an unfairly advantaged person or as a participant in a damaged culture.

 

I was taught to see myself as an individual whose moral state depended on her individual moral will.

 

My schooling followed the pattern in which “neuro-typicals” are taught to think of their lives as morally neutral, normative, and average, and also ideal, so that when we work to benefit others, this is seen as work which will allow “them“ to be more like “us.”

 

I decided to try to work on myself at least by identifying some of the daily effects of “neuro-typical privilege” on my life.

 

As far as I can see, my “non neuro-typical” co-workers, friends and acquaintances with whom I come into daily or frequent contact in this particular time, place and line of work cannot count on most of these conditions.

 

1. I can if I wish arrange to be in the company of people of my own “neuro-typical status” most of the time.

 

2. If I should need to move, I can be pretty sure of renting or purchasing housing in an area, which I can afford and in which I would want to live.

 

3. I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me.

 

4. I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed.

 

5. I can turn on the television or open to the front page of the paper and see people of my “neuro- typical status” widely represented (in positive ways).

 

6. When I am told about our national heritage or about “civilization,” I am shown that people of my ilk made it what it is.

 

7. I can be sure that my children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. I can arrange to protect my children most of the time from people who might not like them.

 

9. Whether I use checks, credit cards or cash, I can count on my “neuro-typical behaviour” not to work against the appearance of my financial reliability.

 

10. I can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. I can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, poverty, or the inadequacies of  “having a non-neuro- typical status”.

 

12. I can speak in public to a powerful group without putting my “neurological status” on trial.

 

13. I can do well in a challenging situation without being called a credit to my “neuro-typical” class.

 

14. I am never asked to speak for all the people of my “neuro- typical” group.

 

15. I can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. I can criticize our government and talk about how much I fear its policies and behavior without being seen as an outsider.

 

17. I can be pretty sure that if I ask to talk to “the person in charge,” I will be facing a person of my own “neuro-typical status”

.

18. I can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of my own “neuro-typical status”.

 

19. I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. I can take a job with an affirmative action employer without having co-workers on the job suspect that I got it because of my “neurological status”.

 

21. I can choose public accommodation without fearing that people of my “neurological status” will be mistreated in the place I have chosen.

 

22. I can be sure that if I need legal or medical help my “neurological status” will not work against me.

 

23. If my day, week or year is going badly, I need not ask of each negative episode or situation whether it has “discriminatory” overtones.

 

I repeatedly forgot each of the realizations on this list until I wrote them down.

 

For me, “neuro-typical privilege” has turned out to be an elusive and fugitive subject.

 

The pressure to avoid it is great, for in facing it I must give up the myth of meritocracy, for if these things are true, this is not such a free country; one’s life is not what one makes it; many doors open for certain people through no virtues of their own.

 

In unpacking this invisible backpack of privilege, I have listed conditions of daily experience which I once took for granted.

 

I now think that we need a more finely differentiated taxonomy of privilege, for some these varieties are only what one would want for everyone in a just society, and for others give license to be ignorant, oblivious, arrogant and destructive.

 

I see a pattern running through the matrix of “neuro- typical privilege”, a pattern of assumptions which were passed on to me as a “neuro-typical” person.

 

My “neurological status” has been an asset for any move that I’m educated to want to make.

 

I could think of myself as belonging in major ways, and of making social systems work for me.

 

I could freely disparage, fear, neglect, or be oblivious to anything outside of the dominant cultural forms.

 

Being of the main culture, I could also criticize it fairly freely.

 

In proportion, as my “neurological status” made my group confident, comfortable, and oblivious, other groups were likely being made unconfident, uncomfortable, and alienated.

 

My “neurological status” protected me from many kinds of hostility, distress, and violence, which I was being subtly trained to visit in turn upon people of “different neurology”.

 

For this reason, the word “privilege” now seems to be misleading.

 

We usually think of privilege as being a favored state, whether earned or conferred by birth or luck. Yet some of the conditions I have described here work to systematically over empower certain groups.

 

Such privilege simply confers dominance because of one’s “neurological status”.

 

I want, then, to distinguish between earned strength and unearned power conferred systematically.

 

Power from unearned privilege can look like strength when it is in fact permission to escape or to dominate.

 

The expectation that your neighbors will be decent to you, or that your “neurological status” will not count against you in court, should be the norm in a just society.

 

For example, the feeling that one belongs within the human circle, as Native Americans say, should not be seen as a privilege for the few.

 

Ideally it is an unearned entitlement.

 

At present, since only a few have it, it is also an unearned advantage for them.

 

This paper results from a process of coming to see that some of the power which I originally saw as attendant on being a human being in the U.S. consisted in an unearned advantage of conferred dominance.

 

I have met very few “neuro-typical” people who are truly distressed about their systemic, unearned advantage and conferred dominance. And so one question for me and others like me is whether we will be like them or whether we will get truly distressed, even outraged about unearned “neuro-typical” advantage and conferred dominance and if so, what will we do to lessen them.

 

In any case, we need to do more work in identifying how these unearned advantages actually affect our daily lives.

 

Many, perhaps most of our “neuro-typical students”, think that “disablism” doesn’t affect them because they are “neuro-typical”, so they do not see being “non neuro-typical” as an identity.

 

In addition, it is hard to disentangle aspects of unearned advantage which rest more on social class, economic class, race, religion, sex and ethnic identity than on other factors.

 

Still, all of the oppressions are interlocking and one factor that seems clear about all of the interlocking oppressions is that they take both active forms, which we can see, and embedded forms, which as a member of the dominant group one is not taught to see.

 

In my class and place, I did not see myself as “discriminatory” because I was taught to recognize “discrimination” only in individual acts of meanness by members of my group, never in the invisible systems conferring unsought “neurological” dominance on my group from birth.

 

Disapproving of these systems won’t be enough to change them.

 

I was taught to think that “discrimination” could end if individuals changed their attitudes.

 

(But) being “neuro-typical” opens many doors for those who are, whether or not we approve of the way dominance has been conferred on us. Individual acts can palliate, but cannot end, these problems.

 

To redesign social systems we need first to acknowledge their colossal unseen dimensions.

 

The silences and denials surrounding privilege are the key political tools here.

 

They keep the thinking about equality or equity incomplete, protecting unearned advantage and conferred dominance by making these taboo subjects.

 

Most talk by “neuro-typicals” about equal opportunity seems to me now to be about equal opportunity to try to get into a position of dominance while denying that systems of dominance exist.

 

It seems to me that obliviousness about “neurological advantage” is kept strongly inculturated so as to maintain the myth of meritocracy, the myth that democratic choice is equally available to all.

 

Keeping most people unaware that freedom of confident action is there for just a small number of people props up those in power, and serves to keep power in the hands of the same groups that have most of it already.

 

Though systemic change takes many decades there are pressing questions for me and I imagine for some others like me if we raise our daily consciousness on the perquisites of being “neuro-typical.”

 

What we will do with such knowledge is an open question?

 

Whether we will choose to use unearned advantage to weaken hidden systems of advantage or whether we will use any of our arbitrarily awarded power to reconstruct power systems on a broader base, is up to us.”

 

This reworking of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, an Associate Director of the Wellesley College Center for Research for Women, was initially written to challenge racism  by looking at it through the lens of “whiteness” and the unspoken level of privilege that whiteness confers upon those who hold it. The vast majority of her article as represented here, continues to remain the work of Peggy McIntosh almost verbatim. The only changes I have made have been to replace the terms “white privilege” with “neuro-typical privilege”, “whiteness” or ‘white/fair skinned” with the word “neuro-typical’ and “race” or “racism” with terms “discrimination”, “neurological status” or “non neuro-typical status”.

Women with Autism – Beware we wear masks (well supposedly anyway).

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I think it’s interesting that many of the articles I’ve read all state, in one way or another, that girls and women on the Autism Spectrum are hard to diagnose because they “mask” their symptoms.

Yet when I look back on my life I don’t see any evidence that I “masked” any of my symptoms at all.

In fact, more often than not, my symptoms/differences were repeatedly pointed out to me and criticized by others.

So what I tend to see, when I look back, is the exact opposite of the claims made by others that women and girls “mask” their differences.

All throughout my  childhood  there is clear evidence that although those around me knew that I was ‘different’, no-one was prepared enough to take any steps toward understanding either how or why my behaviors were so different to those of the children around me.

So for me, I find the statement that girls/women on the Autism Spectrum “mask” their ‘differences’ to be both a very misleading and a potentially harmful one.

One that in a round – about kind of way, ends up placing the blame for the lack of awareness regarding females with Autism, right back at our own feminine feet.

After all, we were the tricky ones who were supposedly “masking” our own behavior’s in order to evade detection.

Is it just me or is anyone else  beginning to feel slightly perplexed by the repetition of this very insidious form of circular  reasoning?

 

Women with Autism – Stepping out of the dark

Lupytha HerminWomen with Autism,

Our lives are no longer about learning how to survive the storm,

Instead we’re now stepping out of the shadows,

That were cast upon us,

By the ignorance of others,

And we’re teaching ourselves and each other,

How to dance, splash and play,

In the colors of life….

And as we dance, splash and play,

We are helping one another,

To reconnect the dots,

Creating ourselves,

Anew.

 

All Alone……

1048992_177511792418513_147821062_oToo often, this is how society makes women with Autism/Asperger’s Syndrome feel………

Yet we are not twisted and we are not bad….

We are all alone because too few have bothered to try and understand us……

So few in fact that we are often told that we need ‘fixing’…..

Yet deep inside we know that we’re not broken….

We are merely different….

Given all of that….

It’s little wonder….

That we have our moments,

Of feeling all alone,

And sad.