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This is a great newsletter. I'm forwarding it to you with the author's

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Martha Ulcak

--- Disability is Natural Newsletter

Date: Tue, 11 Oct 2005 08:50:54 UT

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The Disability is Natural Free Press

www.disabilityisnatural.com

Copyright October 2005 by Kathie Snow

In This Issue:

* Featured Article: The Disability Hierarchy

* Revolutionary Common Sense Articles

* News to Use: Web Sites, Books, and More

* The Disability is Natural Store

* Presentations

* * * * * * * * * * * * * * * * * * * * * * *

Featured Article: The Disability Hierarchy

Copyright 2005, Kathie Snow, www.disabilityisnatural.com

<http://www.disabilityisnatural.com>

Like many who care about disability issues, I'm always concerned about

the public perception of individuals who happen to have disabilities.

Inaccurate fictional depictions in the movies and on TV, pitiful or

heroic portrayals in news stories, and stereotypical perceptions held by

many in the general public leave much to be desired. Through the work of

some activists, glimmers of change are emerging.

Perhaps, however, we should be even more concerned about the attitudes

and actions of ourselves---those within the disability arena:

individuals with disabilities, family members, activists, and those

employed in the field. During the past 14 years as a public speaker, and

as the host of a web site for several years, I've met thousands who care

about disability issues, and I've seen negative attitudes that equal,

and sometimes surpass, the harmful perceptions of the general public.

How can change occur if our words and actions perpetuate the negative

attitudes we say we're trying to eliminate?

It's time to examine this " enemy within, " and I'll start with myself.

When my infant son was diagnosed with " moderate " cerebral palsy " 18

years ago, I reacted the only way I knew at the time, and in a way that

was " accepted " ---I was sad at the diagnosis and negative prognosis, but

was also glad that my son " only " had " moderate " CP, instead of a

" severe " form of CP. I didn't know it at the time, but I was guilty of

embracing the Disability Hierarchy, in which one type and/or severity of

disability is perceived as " better " or " worse " than others. But this

Hierarchy isn't limited to the condition; it extends to the person and

the family, too. Not only did I feel my son wasn't as " bad off " as

children who had a " worse " disability, I also felt our family was

" better " than families where a " worse " disability was present.

In society, this stratification may reinforce pity, and the level of

pity is equivalent to where a particular disability sits on the

Hierarchy. In the disability arena, it can result in physical

segregation, social isolation, and other negative outcomes for people

with disabilities. And the " severity " of these outcomes also corresponds

to where a person's diagnosis sits on the Hierarchy---and a variety of

different Hierarchies exist!

A disability

is

a disability

is

a disability.

I was fortunate, however. Within a few months, I rejected many societal

and professional notions that reflect the Disability Hierarchy. This

transition was enhanced by my participation in the Partners in

Policymaking leadership development program

(www.partnersinpolicymaking.com)

<http://www.partnersinpolicymaking.com/> when my son was three. The

wisdom I gained from the training and my classmates (including adults

with developmental disabilities) helped me adopt new ways of thinking.

I learned that a disability is a disability is a disability---one is not

better or worse than another---and the greatest barrier facing

individuals with disabilities is not the disability itself, but

attitudes about disability and the resulting social policies that

dictate the treatment of people with disabilities. Now, let's move on to

some other examples.

During one of my presentations about attitudes, " " shared the

following about her twin sister, " a, " who uses a wheelchair:

" People talk about Kris like she's not even there, " she exclaimed. " I

mean, she's not retarded---she just uses a chair! " The unspoken message

seemed to indicate it would be acceptable for a to be presumed

incompetent if she did have a cognitive disability, but it was not okay

since her sister had a physical disability. Was aware she was

promoting the Disability Hierarchy? Her next comment was even more

disturbing: " My sister moved into her own apartment for the first time,

and it's really scary for my mom and me---I mean, Krissy is our baby! " I

was stunned! These 20-something young women are twin sisters, yet

sees her sister as " our baby. " Would this occur if a did

not have a disability? Again, it seemed was unaware that she

held the patronizing attitude which she so resented in others. How could

others see a as a competent adult if her own same-aged sister and

her parents didn't?

At another conference, a group of adults (who happened to have cognitive

disabilities) said they liked the stories I shared about my son,

. But I was surprised when one of the leaders sympathetically

said, " sounds like a neat kid, but it's really too bad he can't

walk. " For years, I had heard similar comments from people who knew

nothing about disabilities, who felt this was the " right " response. This

same sentiment was now being uttered by a leader of a self-advocacy

group! He evidently embraced a Hierarchy in which physical disabilities

are " worse " than cognitive disabilities---which is the opposite version

embraced.

" Suzanne, " the leader of a parent organization, told me about helping

" Marcia " with special ed issues. Marcia's child had a part of his brain

removed to control seizures. Suzanne said, " When I think of Marcia's

son, I realized how blessed I am---my son just has autism, and he's very

high-functioning. " Shocked that a " leader " held such an attitude, I

asked, " If you're blessed, what does that make Marcia? Cursed? " She

sputtered that she didn't " mean anything by it. " Then why did she say it

to me, and would she have shared this opinion with Marcia?

We also promote the Hierarchy when we make a diagnosis the defining

characteristic of a person and/or the family member! This occurs during

an introduction like, " I'm the parent of a 'Down syndrome child'; " with

an Email address such as " c5para@...; " or an Email signature like

" Lou, mother of , severe MR and uncontrolled seizures. " In

an Email to me, Lou complained that no one could see past 's

disabilities. Duh---how can they when her signature makes his diagnoses

the most important things about him? And how does feel about

this? The intent of this practice is to " share information, " but few

consider what unintended negative outcomes may occur.

At a meeting of parents of children with disabilities, a " contest "

erupted. Adoptive parents introduced themselves by sharing their

children's labels and " problems. " Some of the birth parents " gave the

prize " to the adoptive parents, saying: " Wow---you've got us beat! You

chose to adopt kids with all these problems! " The adoptive parents upped

the ante with, " Yeah, we knew about our kids' problems, but you didn't,

and you still kept your children, so you're more special. " Gag! This

patronizing " special, heroic parent " myth will never die as long as we

continue to feed it.

It seems no population in the disability arena is exempt from the

stratification of the Disability Hierarchy. A friend who was a Voc-Rehab

counselor said his coworkers often ridiculed people with developmental

disabilities who had come to them for employment help. They spoke freely

in front of my friend who has an acquired disability. He resigned his

position in disgust.

Some organizations tout " their " disability as " worse " or " more

challenging " than others---using a variety of words and strategies, plus

a dose of pity---hoping to reap more fundraising dollars. Some go beyond

the Hierarchy---essentially placing death and disability in the same

category. One organization's brochure includes " Tips for Having a

Healthy Baby " and also features this bold statement: " [We've] achieved a

track record of advances that have saved millions of babies from death

and disability. " This reinforces the " disability as a fate worse than

death " paradigm. And this is demonstrated by a commonly-heard exchange,

when the question, " Do you want a boy or girl, " is usually followed by,

" It doesn't matter, as long as the baby is healthy. " Translation: " As

long as the baby doesn't have a disability. " Babies with disabilities

are considered unhealthy or different, so they're unwanted and have no

value. If this horrific mentality---better to be dead than have a

disability---is present within the disability arena, we shouldn't be

surprised that it also exists in an Academy Award winning movie (Million

Dollar Baby).

Finally, there are some people in specific " disability communities " who

say " their " condition is " so different, " or who state it isn't really a

disability at all! They express vehement disdain if they (or their

children) are said to be similar to others who are on the lower rungs of

their version of the Disability Hierarchy.

Little progress in changing societal attitudes will be made if we

endorse the Disability Hierarchy. And we shouldn't wait for consensus

within the disability arena---that probably won't happen. But we can

exert a positive influence, each in our own way, if we so choose.

Be the change

you want to see

in the world.

Gandhi

Consider your own attitudes, words, and actions. Do they represent a

hierarchical better/worse classification of developmental, acquired,

cognitive, sensory, physical, mental health, and/or other types of

disabilities? Do they indicate a medical diagnosis is the most important

thing about a person? And do they reflect a belief that some people with

disabilities and/or their family members are " so different " from

you/your family?

The mantra, " If you're not part of the solution, you're part of the

problem, " certainly applies to this dilemma. Do your words and actions

affirm positive images of people with all types of disabilities or do

they perpetuate the Disability Hierarchy? It takes courage to look

within; sometimes it's painful. But out of the self-examination can come

positive, powerful change. Perhaps we would do well to follow Gandhi's

sage wisdom: " Be the change you want to see in the world. "

Copyright 2005 Kathie Snow, www.disabilityisnatural.com

<http://www.disabilityisnatural.com>. If you would like a handout (PDF)

of this article, please send your request, along with the title of the

article ( " The Disability Hierarchy " ) to: kathie@...

. You may share and/or distribute

this E-newsletter or the PDF version of the article to other individuals

(non-commercial use only). As a courtesy, please let me know how/when

you use it. Do not violate copyright laws: request permission before

reprinting in any written publications or chat rooms, list serves, web

sites, etc. Please do not hit your " Reply " button to respond---your

message will be delayed. Instead, click on the Email address link above.

* * * * * * * * * * * * * * * * * * * * * * * * *

Revolutionary Common Sense Articles

A variety of articles have been added to the Revolutionary Common Sense

<http://www.disabilityisnatural.com/articles/index.htm> page at

www.disabilityisnatural.com <http://www.disabilityisnatural.com>. Below

are brief descriptions of these articles---new ways of thinking to

inspire and provoke positive change!

Halloween and the Mask of Disability---We're close to the holiday when

kids of all ages can become someone else by simply donning a mask. In

truth, all of us wear a variety of different masks, every day of the

year. What about individuals with disabilities? Many people can't see

the real person; the mask of disability---a permanent, all-defining

mask---gets in the way. But we can change this!

Disability Awareness vs. Similarity Awareness---Many organizations are

promoting Disability Awareness this month. But do the traditional

awareness strategies achieve their intended outcomes? A focus on

differences can unintentionally reinforce prejudice, but a focus on the

similarities shared by people with and without disabilities can

dismantle attitudinal barriers!

When Is a Disability Not a Disability---What is a disability? If we look

beyond our own personal experiences and environments, we'll understand

there is not really a " one-size-fits-all " definition. You might be

wondering, " What difference does it make? " It makes all the difference

in the world to individuals who have been labeled!

Community Leadership for Inclusion---Change. We all want it---and we

want it now! We want children and adults with disabilities to have

better lives. But the solution isn't in the system, it's in our

communities---and we can provide the leadership for positive change!

The Magic (and Lessons) of Movies---Movies---whether pure fantasy or

based on fact---aren't just magical entertainment. They can also be a

source of insight and valuable life lessons that can have a positive

impact on the lives of people with disabilities and their families.

Reflections on Early Intervention Services---EI Services are the

" beginning " for many families. As such, they have the power to influence

the long-term path many families will take for their children with

disabilities. The " wish list " in this article suggests improvements that

can lead to better outcomes for very young children and their families.

When Less is More---When we do too much for children and adults with

disabilities, we encourage " learned helplessness. " What if we do things

differently? If we follow a new recipe, we'll ensure people with

disabilities have the right supports, from the right people, provided in

the right way, and " learned helplessness " will become a relic from the

past.

Why Do We Have Parallel Worlds?---Compare the lives of people with and

without disabilities, and it's easy to see that Disability World and the

Real World exist as parallel---and unequal---worlds. One guiding

principle can help reduce or eliminate this dilemma: if it's not right

for people without disabilities, it's not right for people with

disabilities.

Sibshops: A Sensible Solution?---Described as peer support for brothers

and sisters of children with disabilities, Sibshops are embraced as a

solution for the " problems of siblings. " But a closer look reveals

unintended and harmful consequences that may affect all the children in

a family.

Curriculum Modifications 102-Computers---As a tool, computers can open

the doors to learning and support the successful inclusion of students

with disabilities in general ed classrooms. Computers can ensure all

students can learn and belong together!

Home, Sweet Home (and Other Friendly, Welcoming Environments) - Vision

Supports---A wide variety of vision supports can make any environment

more accessible and user-friendly. From do-it-yourself projects to

high-tech gadgets, the appropriate vision supports can enable children

and adults with disabilities to enjoy all life has to offer!

Visit the Revolutionary Common Sense

<http://www.disabilityisnatural.com/articles/index.htm> page at

www.disabilityisnatural.com <http://www.disabilityisnatural.com> to

download these articles. And check out the NEWLY-REVISED People First

Language <http://www.disabilityisnatural.com/peoplefirstlanguage.htm>

article, too!

* * * * * * * * * * * * * * * * * * * * * * * * *

News to Use: Web Sites, Books, and More

-----The Family Center on Technology and Disability (www.fctd.info)

<http://www.fctd.info/> is a superior web site with innovative and

valuable info about the importance of assistive technology (AT), and

includes helpful articles about AT for children with disabilities in

schools and social settings. Parents: direct your children's teachers to

this site---there are some great articles written by educators that can

help teachers learn strategies to better educate children who use AT

devices in school!

-----The September 21, 2005 " Talk Back " page at www.edweek.org (a

subscription web site) focused on students with disabilities being " left

behind. " According to the site, " A growing number of students with

disabilities are being excluded from federal accountability provisions,

driving up the number of public schools able to make adequate yearly

progress but raising questions about the pledge to leave 'no child

behind'. " Yep, and any number of parents can testify this is happening

to their children! Teachers and parents may, unfortunately, often be on

" opposite sides. " But the problems NCLB is causing for teachers and

students ought to be a motivating factor to bring parents and teachers

into solidarity with one another, so we can effect positive change for

the benefit of all. According to news reports, some states are

considering opting out of NCLB---saying " no " to this Federal regulation

(and the Federal funding). Is it time for a letter writing campaign to

encourage more state legislators to question NCLB? And is it time for

parent groups and teacher unions to join forces in opposing regulations

that are hurting more than helping?

-----Another Federal mess has been created by the " Highly Qualified (HQ)

Teacher " provisions added to the 2004 IDEA (Individuals with

Disabilities Education Act) reauthorization. Yes, a mechanism for

ensuring teachers are qualified is important, but these HQ requirements

are almost creating a " Leave Teachers Behind " situation! Many parents

and educators are embracing inclusive education, and frequently, an

inclusive classroom is achieved when general and special educators

co-teach, to the benefit of all students. But the HQ provisions have the

potential to derail these efforts by eliminating and/or reducing the

participation of special ed teachers in general ed classrooms if they

don't meet the HQ provisions for subject matter---even if they've been

successfully teaching the general ed curriculum for many years.

Doesn't it make you wonder about the Federal mentality? Think about

it---a lawyer with no judicial experience in Constitutional law has been

nominated as a Supreme Court Justice. Her " supervisor " pooh-poohs her

lack of Constitutional law experience and adds, " She's highly

qualified---trust me! " If a " highly-qualified " endorsement by a

supervisor is good enough for a Supreme Court Justice nominee, perhaps

it should be good enough for special ed teachers who are helping educate

students with disabilities in inclusive general ed classrooms! More info

about the 2004 IDEA regulations can be found at

www.ed.gov/policy/speced/guid/idea/idea2004.html

<http://www.ed.gov/policy/speced/guid/idea/idea2004.html> and

www.ideapartnership.org. <http://www.ideapartnership.org/>

-----Speaking of inclusive education, Carolyn Das, a parent, activist,

and Michigan Partners in Policymaking graduate, shared info about the

Whole Schooling Consortium, an " international network of schools,

teachers, parents, administrators, university faculty, and community

members, " whose " purpose is to promote excellence and equity in schools

throughout the world to build inclusive and democratic societies. " Check

out the web site at www.coe.wayne.edu/wholeschooling

<http://www.coe.wayne.edu:16080/wholeschooling/>.

-----When I present on inclusive education, I always recommend that

parents run for their local school board, in order to influence school

board policies and practices related to the inclusion of students with

disabilities. Many parents scoff---they just can't see themselves on

their local school board, thinking only Big Shots are able to run for

public office. But I remind parents that school board members put their

pants or pantyhose on just like everyone else! Vicki Goodrich, a parent

from Oregon, heard my message a few years ago at Oregon Partners in

Policymaking and guess what? She and two other parents and a disability

advocate have been elected to their local Educational Service District!

Congratulations to Vicki and her cohorts! See, parents, we can become

policymakers and influence the direction of our local school boards!

---Two books---one old and one new---are must-reads (with lots of Ah-Ha

moments) if you want a more complete picture of the who, what, where,

when, why, and how of the human services industry's influence over, and

relationship with, people with disabilities and their families.

Disabling Professions, by Ivan Illich and other contributors (including

McKnight), was first published in the late '70s. I " discovered " it

at my local library a few years ago and it was life-changing. I wanted

my own copy---to mark in and dog ear---but it was out of print at the

time. It's back in print now, and this little book provides big

insights. The back cover notes include, " Why do we put so much resource

into medicine, education and the law with so little apparent result? Why

do we hold the professions in awe and allow them to set up what are in

effect monopolies? " The authors provided wisdom and warnings----warnings

that have not been heeded---and with the increase in " professional

dependence " over the past 30 years, their message is more important than

ever.

From Snake Pits to Cash Cows: Politics and Public Institutions in New

York by J. Castellani is an eye-opening book that unlocks the

mysteries of the evolution of services---from public institutions to the

so-called improvements of today (Medicaid waivers and more).

Castellani's research reveals how " good intentions " were hijacked by

politics, special interest groups, funding mechanisms, and more---and

it's still going on today, in every state! While the book focuses on New

York, you'll quickly realize that your own state is probably

similar---so there are many lessons for us all. This book reinforces my

belief that the " answer " is never in The System!

---And speaking of The System, like millions of others, I was dismayed

and horrified by the unbelievably inept governmental response (local,

state, and federal) to the crises created by Hurricanes Katrina and

Rita. I was simultaneously delighted by the numerous reports of the

helpful, speedy responses by individuals and organizations who, on their

own, did what needed to be done. In some cases, one person made a

difference; in others, small groups of people gathered medicine, water,

food, and/or other resources to meet the needs of the hurricane

survivors. This was " community " at its best---as well as proof that the

natural supports and generic services in our communities are a richer,

more relevant, and more dependable source of assistance than any

government system.

* * * * * * * * * * * * * * * * * * * * * * * * *

The Disability is Natural Store

It's not too early to be thinking about Holiday Gift-Giving! Visit the

Disability is Natural Online Store

<http://www.disabilityisnatural.com/store/index.html> for unique

gifts---available only from Disability is Natural! The disability

awareness wristbands, badges, stickers, note cards, bumper stickers, and

other small treasures make great stocking stuffers or gifts for

teachers, classmates, and others on your list. What about a poster for

your home, office, or classroom? We offer a variety of posters, both

large and small---including the very popular People First Language and

Disability is Natural video posters.

Parents, teachers, family members, and anyone who cares about the

success of children with disabilities will appreciate the Disability is

Natural book. It's a thoughtful, provocative, life-altering guide that

can help ensure children with disabilities lives Real Lives, included in

all aspects of our society. The Disability is Natural video/DVD is a

great companion to the book, or a perfect stand-alone gift to promote a

new paradigm of disability.

Eighteen designs that feature positive messages about disability are

available on T-shirts, sweatshirts, and tote bags. Visit the Disability

is Natural Online Store

<http://www.disabilityisnatural.com/store/index.html> to see these and

other colorful, motivating, up-beat products that encourage New Ways of

Thinking about disability!

* * * * * * * * * * * * * * * * * * * * * * * * *

Presentations

If you're in Western Pennsylvania; Asheville, NC; or Milford, CT; I'd

love to see you at the " open to the public " conferences where I'll be

presenting in October and November! For more information about these

events, visit the Presentations

<http://www.disabilityisnatural.com/presentations.htm> page at

www.disabilityisnatural.com <http://www.disabilityisnatural.com>.

If you're interested in having me present in your neck of the woods,

drop me a note at kathie@....

I'll be happy to send you an

info sheet, and would love the opportunity to plant some seeds for

change in your community!

* * * * * * * * * * * * * * * * * * * * * * * * *

Thanks for your interest in new ways of thinking! Feel free to print and

share this E-newsletter and/or forward to others. (But please request

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And thanks for all you do to create an inclusive society where everyone

belongs!

Kathie Snow

The Disability is Natural Free Press

Copyright October 2005, Kathie Snow, www.disabilityisnatural.com,

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