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Light Box

  • Posted on July 1, 2013 at 10:00 AM

My brother, Patrick, is a fabulous uncle to his three autistic nephews.

Now, in our case, we’re luckily enough to be blessed with a really understanding, supportive family who not only accept that our boys are different, but go out of their way to accommodate these three precious members of the family. We’re surrounded by this loving effort year-round, on all sides.

And I know this is a substantial blessing, because I talk to other parents and am often saddened to hear how other autistic children are excluded from events shared by their families. I think back to when the boys were little and none of us knew what was going on and remember just how hard it all was for everyone. So, I get it. I do.

But, at the same time, I don’t, because once we knew what we were dealing with our entire family made an effort to include these three special children. No ONE, not even one member of my family, has made my boys unwelcome. It took effort on all our parts, but the effort was made. And it works. Sure, our family events are different than they otherwise would be, but they do work. And, believe me, I know how lucky we are and how very blessed we are, because I couldn’t do what I do without all this wonderful, heart-warming support.

So, it’s not like my brother is a novelty when it comes to embracing my children as they are.

And yet, my brother is a novelty, because he gets my boys in a way that nobody else does, that nobody else would think of. Including me. Including Mark. Patrick understands a part of them that is its own special connection. And I’m constantly astounded by this, because he’s able to do this despite the distance that often separates us all.

My brother came for my commencement ceremony and during this visit the magic happened with a light box. Technically, a light box is not a toy. It’s a fancy tool that artists and architects use to do work. Patrick had one, and he decided to give it to his nephews.

M – A – G – I – C

It’s that simple.

Willy was fascinated. Alex was captivated. And Ben…adorable Ben. I turned around and saw Ben listening to the light. He was smiling, enjoying it, and listening to the light. I haven’t tried, so I don’t know if I could hear what he heard. But…that was so Ben and so strangely appropriate.

M – A – G – I – C

I can encourage my boys in their art. I can supply them with materials. I can look for opportunities. And I’m not alone in this. Many members of our family have contributed to their love of art, which gives them such joy.

But my brother understands this on a deeper level. On a light box level. And it’s its own kind of magic.

Embracing the Chaos of Autism: A Signature Speech (in progress)

  • Posted on October 8, 2012 at 8:00 AM

As part of my author-career development process, I’m supposed to create a signature speech based on my book. Embracing the Chaos of Autism is the working title of this speech. The premise of the speech is to use stories to teach others the importance of individual-focused treatments, with empowerment and development (versus cure and normalcy) as the goals of those treatments.

Basically, as a society we’ve focused a lot on principles—principles of parenting, principles of education, principles of self-development—which suggest that a universal approach or structure works (or should work) for everyone. In raising my three children with autism, I have had to set aside most of these principles. Instead, I focus on my child, his needs, and the strategies and techniques that work for him—each of them require a different, individual focus.

My goal is not to get my child to a point where those “universal” principles can become successful. Instead, my goal is to empower my child—as he is, for who is he—to reach his unique, individual potential.

This individual focus seems so simple, and yet the difference is remarkable. There’s this belief that seems to hang around parent circles that the goal is to make a disabled child “indistinguishable” from his or her peers. Everybody should just be like everybody else, right? Yet, parents of typical children are often driven to make their child “distinguished.”

So, when does it end? Why are we so driven to make our children something they’re not, instead of helping them grow into the exceptional, wonderful, awesome people that they are?

We don’t have to accept the norms of parenting. We don’t have to strive to be normal. Autism isn’t normal, but there is a “normal” for each individual with autism. Maximizing that “normal” for the best benefit of the child makes for stronger children, stronger families, and stronger communities.

Thoughts?

Stillness

  • Posted on May 15, 2010 at 10:00 PM

Executive Summary:  Alex dislikes dental work.  I believe in empowering patients to make choices regarding their own dental care.  Yet, I do not allow Alex to refuse dental care.  The difference is that care is being sought for my child’s benefit, and not my convenience.

The waiting room was okay.  Alex bounded from spot to spot, reading as many words as he could find.  Then, the dental assistant came.  We talked for a few moments.  When it was time to go into the back I called Alex to me, but he didn’t come.  I took him by the hand.  He walked with me and stopped a few paces in front of the door.  I tugged gently on his hand, an act that was more communication then force.  He looked at me, and took just enough steps forward so he was inside the door.  The door closed behind him.  Step by step, we moved forward—him resisting, me encouraging.

I said, “I will carry you if I have to.”

Alex chose to walk.

The dentist’s office is a difficult place for Alex to be.  He generally resists anything that involves others touching his mouth.  He resists brushing his teeth, flossing, and all forms of dental care.  He resists us looking at his teeth or checking for wiggly, loose ones.  He resists the removal of wiggly, loose teeth or the removal of any miscellaneous particles he decides to chew on.

I expect resistance, which is why I travel two hours to take him to this clinic.  The staff is prepared for his resistance and the facility is equipped to make dental care as safe and as comfortable as possible.

This particular appointment was a “quickie.”  The task was to fill a chip on his front tooth.  Easy access.  No drilling.  No paste.  If Alex had cooperated the whole thing would have taken 5 to 10 minutes.

Of course, Alex did not cooperate.  Or, to be more accurate, Alex cooperated as much as he was able to do with his current level of oversensitivity and anxiety.  He squirmed most of the time.  He cried quite a bit of the time.  He got out some good words, through a pry-thing that forced his teeth apart, saying, “I don’t want.  Don’t want.  I don’t want.”

We acknowledge his words.  We told him we understood.  We explained as best we could that we had to fix his tooth so the big-boy tooth didn’t rot and break the way his baby tooth had done.  He understood.  He took a few ragged breaths and was relatively calm (but still squirming) for a few precious moments, which gave the dentist the opportunity she needed.

The dentist was quick as she could be.  She talked to Alex with respect while she worked within his limited range of cooperation.  She chided him when necessary and complimented him whenever possible.  In the beginning of the session, she joined in as I sang Alex’s special song to him to help him control his anxiety.

Alexander, Alexander.  I love you.  Yes I do.

Really special boy-oy.  Really special boy-oy.

I love you.  Yes I do-o-o-o-o.

Despite not liking the work she does, Alex likes his dentist quite a lot.  He made excellent eye contact with her, which is rare.  When it was all done, he even smiled for her.  But for all that he likes he, that doesn’t mean he’s able to cooperate while he’s in that chair.

The experience is hard on all of us.  He doesn’t want to do this.  I empathize, because I find the dental experience to be a miserable one myself.  I also don’t want Alex’s teeth to deteriorate the way mine have after a childhood (and much of my adulthood) of not receiving proper dental care.  I know, in the long-run, the misery of receiving dental care today is much, much better than the misery of decayed teeth with its tooth aches, drilling, pulling, and fake teeth.

One might think that all of this is beyond his understanding, but Alex gets it.  As much as he dislikes this he does get that we’re not trying to hurt him or ignore his wishes.  He gets that this needs to be done, and he gets that we try to make it as good for him as we can.  There was a precious moment after the filling was put on and set when Alex was calm.  He stopped squirming and crying.  He took a few ragged breaths.  He looked at the dentist’s face and he waited.  It was like he was saying, “Okay, what happens now.  I’m ready.”

The only thing that was left at the point was the x-ray.  Last time it took an extra person and four tries.  This time it only took two tries and no extra assistance.

We’re making progress.  Alex did really well.  The dentist and I praised Alex profusely.  Alex left with a smile, but he also left as quickly as he could.

Still, I look back and think about that precious moment of stillness.  As a mom, one of my biggest challenges is doing things to my kids that I know they don’t want, but need anyway.  Things like dental care, shots, and surgery.  These unwanted needs make me wonder how deeply my respect for my children really goes.  I strongly advocate the patient’s right to choose the type of care received or to forego care entirely.  I advocate these rights for patients who society deems incompetent to make these decisions.  Yet I make decisions like this for my children.

There are times I feel like a hypocrite.

Then, I think about that moment of stillness.  I think about the smile Alex gave to the doctor.  I think about the way he cuddled close to me after all of it was over, and how he relaxed after I told him he did a good job and that I was proud of him.

I think about how there are times, even as an adult, when I don’t want, but still need medical care.  I think about how anxiety-laden my own dental appointments are.  I think about how much it hurt to regain the mobility of my wrist.  I think about how, after the surgery on my wrist, I kept apologizing for needing a heftier dose of pain medication.  When I got home I apologized for needing my husband and my mother’s help.

And I let go of the guilt and the doubt.  I’m not a hypocrite.  As a parent, I have to make some tough decisions.  I have to decide what medical care has sufficient value to force that care on my children.  Sometimes this means dosing the child with antibiotics.  Other times it means restraining my child so a dentist can fix his teeth.  Sometimes it means talking the child through the anxiety of getting blood drawn or getting a shot.  But at no time do I do these things for me.  At no time do I put my convenience over my child’s care.  At no time do I treat my child as if his will doesn’t matter.  I talk, I explain, and I comfort.  I give my children choices whenever I can.  I refrain from making choices based on my needs or my convenience, but base my decisions on the long-term best interests of my child.  And my children recognize the difference.  That difference is going to empower my children to make their own decisions in the future.

The (Un)Importance of Words

  • Posted on May 10, 2010 at 2:20 AM

Don’t get me wrong.  I love words.  I believe the words we use and the way we use them are very important.  But, when it comes to the issues of disabilities—acceptance, inclusion, empowerment, and accommodations—words are of secondary importance.

A new reader recently suggested that I’m a proponent of people-first language.  While this assertion is wholly understandable, it is not accurate.

As a writer, I find people-first language to be clumsy.  It interrupts the flow of the prose.  Yet, I would readily and easily sacrifice the flow of my prose for the sake of putting people first.

Except, people-first language doesn’t do that.

People-first language doesn’t put people first, conceptually speaking.  It’s a political device that puts politics first.  I have far too often heard others use people-first language in an ablistic, derogatory, people-last manner.

“My son is a child with autism.  It’s so horrible having a child with autism that I’ve considered taking him by the hand and jumping off a bridge.”

People-first language is only as good as the thinking of its user.  Disability-first language is only as bad as the thinking of its user.  When I say my children with autism or my autistic children, my language has changed but my thinking has not.  If I use auties, autists, or autistic, my language has changed but my thinking has not.  My children are always people first in my mind.  That’s how I conceptualize them.  They are people.  Facets of those people manifest themselves in behaviors psychologists (and, in turn, society) describe as autism.  Thus, they are people with autism.

People-first language does not change people’s thinking.  People-first language just changes their speaking.  To change people’s minds, their thinking needs to change.  Language can help.  People-first language can help.  But people-first language is not the solution; and it is often the smoke-screen that disguises the problem.

Yet…  Autism is somewhat unique in this respect.  While I do not see “blind people” as being blind first and people second regardless of the language I use, I also do not feel comfortable citing such a disability first and the person second.  I prefer, clunky as it is, to use “person with a visual impairment.”  Though I will gladly use whatever the individual prefers.  The same goes for other physical or mental/intellectual disabilities.

Part of the reason why I make this distinction is because Western culture has, for so very long, seen people with these kinds of disabilities as being not-whole, and therefore not valuable.  It’s so easy to see the disability first.  Yet, by putting the person first we can hope (however much in vain) that people will start seeing the people, regardless of their abilities/disabilities.

Yet…  The more my path crosses with other disability rights advocates—those not directly associated with neurodiversity—the more I see advocates re-claiming words like “crip.”  I try to respect and appreciate what they’re trying to do.  I try.  But the idea of calling another human being a “crip” makes me uncomfortable.  But, if that is their choice, who am I to say they’re wrong?

In short, I am an advocate of people-first thinking.  If we need people-first language to facilitate that thinking, then so be it.  Someday I hope people-first thinking will be so strongly ingrained in our societal make-up that we can talk with and about people with any disability without having to think about what to call them.

***

Now, on a different note, if you’re interested in exploring language in a poetic style, I would recommend checking out http://www.wordgathering.com/ .  The Inglis House Poetry Contest has two categories.  One is open to all.  The other is limited to writers with disabilities.  The subject of poems submitted to both categories is disabilities.  There’s no entry fee, but there is a prize.  So, if you like to play with words give it a try!  The deadline is June 1st, though, so you’ve got to be quick!

“Letting Off Steam”

  • Posted on February 26, 2010 at 8:37 PM

At first, I envision one of those old cartoon trains or factories.  Some boiler made out of cartoon silly putty is about to explode.  Then, just in time, they let the steam off and all is well.

Perhaps a better vision is a simple teapot.  “I’m a little teapot, short and stout…hear me shout.”  We fill the teapot with water and set it to boil.  When it’s hot, it steams, and the steam goes through the opening and makes a whistling sound that calls us over to brew our tea.  Letting off steam is not only functional; it is built into the design to serve a specific, automatic purpose.

And so, as I look around at all the bloggers who, upon on occasion, take a jab at the neurotypical world—making fun, building their fan base with a little humor—I try to see a teapot.  But I’m not very good at making pictures in mind.  In fact, I cannot.  I spin words and concepts and feelings, and from them I shape pictures with the words I place on the page.  Overwhelming any picture I try to construct in this manner is the feeling of sorrow and regret that comes creeping over me.  These jabs are not a functional little teapot, however normal and understandable they are.  These jabs are not “neurodiversity at its finest” or even “neurodiversity at its worst.”  In fact, they cannot represent neurodiversity at all.

In an earlier post, I said:

5) You cannot claim to value diversity and dislike individuals or groups based on traits beyond their control.  For example, you cannot dislike someone who embarrasses you by having a seizure in public and still value diversity.

Every time a neurologically atypical person makes fun of a neurological typical person because they’re neurotypical or attributes an entire set of behaviors to neurotypical people on the basis of a few representative examples, you are divorcing yourself (at least, for a little while) from the concept of neurodiversity.  If neurodiversity, as per the meaning I proposed, is something you believe in, then you betray your own beliefs by doing this.

I’m not point fingers or citing names.  My pot is just as black as your kettle, and I know that.  It’s a very human pattern of behavior.  We let off steam, especially in the face of adversity.  It’s normal.  It’s natural.

But it’s wrong.

It’s an act of prejudice.  It’s counterproductive to the concept we purport and support.  And we weaken ourselves every time we give in to this impulse.  And we know better.  We really do.  We can say we don’t, we can justify ourselves, but these are excuses.  We know better.  If we didn’t—if our standards weren’t set higher than this behavior allows—we wouldn’t be demanding respect, acceptance, and dignity for neurologically atypical people.  We do know better.  Respect has to be mutual; it has to go both ways.

The stereotypical neurotypical person erects barriers for others, wrapping themselves in ignorance and privilege, ignoring neurologically atypical people, and forcing their ways on us.  It happens.  There really are people like that.  But, it’s also a stereotype.  The people who behave in this way represent only themselves; they do not represent neurotypical people and should not represent neurotypical people in our minds.  If you do not recognize that or cannot acknowledge that, then you do not support neurodiversity as I define it.  If you support any semblance of neurodiversity it is strictly on the basis that the concept empowers you.  If that is the case, please stick to empowerment.  You do not have to respect diversity to advocate for empowerment of unprivileged individuals.  You do have to respect diversity to advocate for neurodiversity, otherwise you’re just a hypocrite and there’re enough of those in the world, thanks.

The True Meaning of Diversity

  • Posted on February 20, 2010 at 3:18 AM

“The true meaning of valuing diversity is to respect and enjoy a wide range of cultural and individual differences, thereby including everybody,” (The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 381).

Diversity goes beyond recognizing that we are different in measurable ways.  Diversity goes beyond tolerance.  Diversity goes beyond offering assistance to excluded individuals.  Diversity is about inclusion.

In some sense, I have ignored those diagnosed with Asperger’s who object to being lumped into the same diagnostic category as my children.  Their words, their behavior—it’s beneath my contempt, it makes me angry, and it’s so hypocritical, so absurd that it really doesn’t warrant a response.  Except it does, because there are those who claim their words represent neurodiversity.  It got that response from people much more influential than I.

This post is not about them, though the words I write could apply.  This about what I consider the fundamentals of neurodiversity to be.

Consider the difference between cultural diversity and affirmative action.  Both seek to include people with different racial, ethnic, and national profiles in the workplace.  One does so by focusing on differences and disadvantages.  The other focuses on similarities and strengths.  One assumes that those who weren’t born white Americans need help getting a job.  The other assumes that everyone needs opportunities and can add value to a firm.

Neurodiversity is to cultural diversity what empowerment is to affirmative actionNeurodiversity and empowerment parallel each other in many respects; but, they are not synonyms, they are not the same.  Both have their place, but they are not the same.

Neurodiversity is not about services, accommodations, treatment methods, or any of the issues that are often in the forefront of our dialogues.  People who believe in neurodiversity do not share the same opinion about all of these things.  Those issues are not the essence of neurodiversity.

Neurodiversity is about two things:

1) People are naturally and normally neurologically different.  Some of these natural, normal differences are labeled “abnormal,” “disorders,” “syndromes,” or other value-laden labels that interferes with our ability to understand the different subsets of human neurology.

2) Human beings are valuable, in all their diversity, in and of themselves.

This means:

1) You cannot claim to value diversity and claim to be superior.  Those two statements cannot be combined without the use of a logical fallacy.  It would not, however, invalidate a claim to value diversity if you are struggling with feelings of superiority.

2) You can claim to value diversity and yet desire assistance, accommodations, and/or medical treatments.  The use of assistance, accommodation, and/or medical treatments does not invalidate a claim of valuing diversity.

3) You cannot claim to value diversity and claim to be inferior.  Those two statements cannot be combined without the use of a logical fallacy.  It would not, however, invalidate a claim to value diversity if you are struggling with feelings of inferiority.

4) You can claim to value diversity and dislike specific people because of the things they say or do that are within their control.  For example, you can dislike someone who bullies you and still value diversity.

5) You cannot claim to value diversity and dislike individuals or groups based on traits beyond their control.  For example, you cannot dislike someone who embarrasses you by having a seizure in public and still value diversity.

6) You can support the research of human differences and still value diversity.  For example, you can support the research into the various causes of autism and still support neurodiversity.

7) You cannot support the forced eradication of a group based on an undesirable trait and still value diversity.  For example, you cannot support diversity and research a way to identify and eliminate autistic fetuses.

8) You can advocate techniques that minimize or “un-does” challenges and still value diversity.  For example, a person can support the inclusion of individuals with spinal cord injuries and support researching ways to correct damage to their spinal cords.  A person can also support the inclusion of individuals who cannot talk and support researching ways to give them access to speech.

9) You cannot advocate the “cure” of a diverse group and still value diversity.  For example, you cannot support racial diversity and try to cure “blackness.”  Neither can you support neurodiversity and try to cure autism or bi-polar or any other neurological subtype.

Neurodiversity is about recognizing that the human race has natural neurological variations, accepting the individuals with all those variations, and including them in society.  It is about giving people the power and the opportunity to achieve their own individual potential, not quantifying that potential and dismissing those who do not “measure up” from consideration.  A belief in neurodiversity does not preclude the experience of disability.  A belief in neurodiversity does not preclude the desire to overcome the experience of disability, either temporarily or permanently.  A belief in neurodiversity doesn’t even preclude a belief that the government has no business extending entitlements or “special rights” to disadvantaged groups.  A belief in neurodiversity does, however, preclude the belief that you are in any way superior to another on the basis of things beyond your or their control.  Being smarter doesn’t make you better.  Being more socially adaptable doesn’t make you better.  Being more emotionally stable doesn’t make you better.  If you want to feel “better,” then use your abilities (whatever they are) to help others.  Not only will you really feel better, but it’ll be a better feeling than any false sense of superiority could ever give you.