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.

Could starting up and running a Facebook Page be for you? Some of the benefits and pitfalls that you may need to be aware of.

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A few weeks ago I started a Facebook page and I must say that the entire process of doing so was an incredibly easy one.

At every stage along the way there where prompts reminding me of what needed to be done and even suggestions as to how to do them more easily.

Yet, whilst the mechanics of if have been remarkably easy, by far and away, the hardest part of starting up a Facebook page has been finding the right ways to express what it is exactly,  you want  your  page to achieve.

In my case, I wanted to create a page that focused on the female experience of living with Asperger’s Syndrome / High Functioning Autism.

Which in itself sounds fairly straight forward but in actual fact  has proven to be far more difficult than I had at first thought.

So simply having an idea, whether it be specific or not,  as to what you’d like your page to be about, still leaves you only half way there and this is because,  even though you may have a clear concept of what it is you’d like to discuss, share or achieve on your page, others may have very different ideas as to how they perceive or wish to interact with your page.

For instance, even though my page is dedicated to primarily expressing and exploring the experiences of women with Asperger’s, it has been joined by several people who are  either the parents of daughters with Asperger’s Syndrome or the partners of someone with Asperger’s Syndrome.

This is fine by me and for the most part I applaud parents for being open enough to listen too and learn from,  where relevant, the experiences of women who have been in their children’s shoes, but, there are times when either I myself, or someone else, will share a post or a comment, that whilst not designed to hurt the feelings of non-Asperger’s women or parents, never the less, becomes perceived as doing so.

In such cases, the negative comments made by those who feel slighted, often effectively shuts down  any and all further discussion surrounding whatever the topic of the post may have been.

This remains an issue that I am unsure how to confront, as even those people who run Facebook pages that have taken the time to make it very clear that they are designed first and foremost for a specific purpose, still find themselves  in the predicament of having to try and clear up other people’s misconceptions of their comments or posts.

It seems that no matter what you do you can never please everyone, yet I’m  still far from convinced that this fact alone means that one should settle for the potential of offending everyone either.

fblikeAnother issue that has  become somewhat of a quandary to me is the way in which “likes” for particular posts are being both attributed and distributed by Facebook.

For instance, running a much smaller page on Facebook I’ve found that often the bigger pages will pick up on one of my posts and “share” it on their own pages.

Now I don’t mind this happening at all, after all the aim is to spread awareness, and when it first began happening I thought it was a good thing as it was providing my page with exposure.

However this turns out to be less the case because in the process  of the bigger pages doing so, the “likes” for whatever post they’ve chosen to “share”  end up becoming  attributed to their page’s alone.

This means that although it’s may be my post, from my page, that people may be “liking”, the  fact that it is being distributed on a larger page means that those “likes” never make it back to or become attributed to, my page.

Normally this wouldn’t be so much of a problem, however, the way  in which Facebook chooses to promote  ‘not for profit pages’ makes it so, as the capacity of any such page to reach new members , depends entirely upon the amount of “likes” it receives.

The more “likes” a page receives, the bigger the page becomes and the size of the page decides how high up on the list of recommended pages, it will appear on Facebook.

The higher up the list a page appears, the more likely it is that it will continue to attract new members and therefore grow.

So, under this system, if  bigger pages continue to be the sole beneficiaries  of the  “likes” they receive  for “sharing” smaller pages posts, then effectively the  bigger pages will continue to boom and the smaller pages will continue to remain just that, small.

This to me sets up a kind of dog eat dog system of promotion, which is something to bear in mind and be prepared for, if you are thinking of starting up a Facebook Page.

So although Facebook makes it incredibly easy to start your own Facebook Page, these are  just  some of the issues associated with starting up and running a Facebook page that you need to be aware of.

In the end, whether or not you choose to start-up a Facebook page, may well all come down to a matter of deciding what it is you want to achieve and whether or not that goal can best be achieved via Facebook.

 

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”.

My Grandmother – The eternal gardener.

garden 2

When I think of my grandmother, I remember a woman who was very set in her ways, very regimented and extremely routine based.

gardnen 1A woman who rarely seemed to smile yet held a deep sense of commitment to family and an immense passion for growing flowers.

As an avid gardener, she could always be found, out in her field of flowers, and when I say always, I mean always, as in each and every day, come rain, hail or sun blistering heat so hot that it could give a person sun stroke.

Yet despite her love of being in the great outdoors, she rarely left the comfortable familiarity of her own land.

If anything had to be gathered in from the outside world, such as groceries, she’d write a list and send my grandfather out to fetch them.

As a child, I had assumed that everybody’s grandmother’s behaved in this way and that older women simply did not like having to be bothered with such tasks.

It is only now as an adult, that I am able to look back and wonder whether or not her actions were driven by a strong inner need for familiarity, routine and the desire to avoid non-essential social contact.

gardenerI’d love to have been mature enough to have asked her how she truly viewed and felt about her life before she passed away.

I can’t help wonder how such a conversation between the two of us may have gone and whether or not  we would have found our much-needed piece of common ground, upon which we could have stood together, while gazing out at all of her beloved flowers.