Re: dwarfism as disability

[Guest guest]

Under the ADA (Americans with Disabilities Act) a person with

Dwarfism is protected Under the ADA. Because to the ADA a disability

is described as

~~~~~~~~~

ADA, Title 1 chapter II. Who is Protected By the ADA?

Individual with a Disability

Qualified Individual with a Disability

2.2 Individual With a Disability

The ADA has a three-part definition of " disability " . This

Definition, based on the definition under the Rehabilitation Act,

Reflects the specific types of discrimination experienced by people

with disabilities.

Accordingly, it is not the same as the definition of disability in

other laws, such as state workers' compensation laws or other federal

or state laws that provide benefits for people with disabilities and

disabled veterans.

Under the ADA, an Individual with a disability is a person who has:

A Physical or mental impairment that substantially limits one or

more major life activities;

A record of such an impairment or

Is regarded as having such an impairment.

2.1(a) An Impairment that Substantially Limits Major life Activities

The first part of this definition has three major subparts that

further define who is and who is not protected by the ADA.

(i) a Physical or Mental Impairment

(see ADA title I chapter II paragraph 2.1(a) for complete definition)

(ii) Major Life Activities

To be a disability covered by the ADA, an impairment must

substantially limit one or more MAJOR LIFE ACTIVITIES. These are

activities that an average person can perform with little or no

difficulty. Examples are:

Walking

Speaking

Breathing

Performing manual tasks

Seeing

Hearing

Learning

Caring for oneself working.

These are examples only. Other activities as sitting, standing,

lifting, or reading are also major life activities.

~~~~~~~~~~~~~~~

Please note that the following information was taken directly out of

the ADA Title one. I also included where you can find the information

for yourself.

As a person with dwarfism, I have a disability, according to the ADA.

I cannot do many things without accommodations, therefore I have a

disability.

I have chosen to accept it, and work with it.

For More information, I encourage you to call the ADA Technical

Center 800-949-4232

a Marden

Information and Referral

Granite State Independent Living

[Guest guest]

Joe wrote:

> I have been following the recent posts about defining dwarfism as a

> disability with great interest. To be honest, I have been slightly

> troubled that the entire discussion has revolved around Social

> Security Insurance as the defining authority of who is disabled and

> who isn't.

Very well said (the whole email, not just this bit), Joe. I think it's

particularly important when we as disabled people are presenting

ourselves as equal members in society, as well as members of the

workforce. Many of these programs, after all, are run on the basis of

who is considered unable to work.

Ian

[Guest guest]

However, in the meantime, there are people who are struggling to put food on

the table. Struggling to get health insurance. Struggling to get an

education. And if the government says you got to dance like an organ

grinder's monkey to get help, then some of us do it.

It's where pragmatism meets idealism.

Ideally I agree with both of you guys. But some people need help NOW, and

can't wait for a movement to coalesce that is going to change government

policy. Those " big picture " changes occur incrementally, and sometimes

excruciatingly slowly. Look at Women's Suffrage and Civil Rights.

What confuses me about your posts, Joe, is whether you are criticizing

people for getting on the " government dole " and sharing the tricks of the

trade for doing so. I, for one, am not going to criticize anyone who feeds

their family or gets them medical insurance (sort of like the quandary LPA

finds itself in the entertainment vs. self respect argument.)

The real shame is the bureaucratic hoops SSI forces people to jump through

to get assistance. That is what is demeaning, not the act of getting

assistance. I was able to get SSDI for a couple years, and I was lucky in

that the doctor who did my eligibity determination took one look at me and

approved my request on the first attempt. Then, when I was ready to go back

to work, SSA had a " back-to-work " program which allowed me to work full time

for up to 11 months and still receive benefits. A great help for getting

past those dreaded " probationary " periods and for testing the waters in the

workplace without fear of losing support.

Bill

On 7/26/07, Ian <ismith@...> wrote:

>

> Joe wrote:

> > I have been following the recent posts about defining dwarfism as a

> > disability with great interest. To be honest, I have been slightly

> > troubled that the entire discussion has revolved around Social

> > Security Insurance as the defining authority of who is disabled and

> > who isn't.

>

> Very well said (the whole email, not just this bit), Joe. I think it's

> particularly important when we as disabled people are presenting

> ourselves as equal members in society, as well as members of the

> workforce. Many of these programs, after all, are run on the basis of

> who is considered unable to work.

>

> Ian

>

[Guest guest]

Bill Bradford wrote:

> What confuses me about your posts, Joe, is whether you are criticizing

> people for getting on the " government dole " and sharing the tricks of

> the trade for doing so. I, for one, am not going to criticize anyone

> who feeds their family or gets them medical insurance (sort of like the

> quandary LPA finds itself in the entertainment vs. self respect argument.)

I have no objection to that, and I apologize if that was unclear from

what I wrote. I do think, however, that we (not LPs, or the disabled

community, necessarily, but society in general) are too quick to decide

that government standards are what make us disabled or not. That is

perhaps at odds with our ability to self-identify as disabled.

As you said, the hoops that the SSA puts in front of people before they

can receive benefits they're entitled to are ridiculous. That shouldn't

limit the ways in which we describe our community, though.

Ian

[Guest guest]

Ian hit the nail on the head here. I did NOT mean that SSI shouldn't

be available to those who need it. I realize that I am writing these

things from the a position of extreme privilege as a young, upper

middle class Caucasian male. It's likely that I have this ability to

be so idealistic because of that position of privalege.

However, my point was not to criticize people that get SSI! Rather,

my point was to say it troubles me that when the question is raised of

whether LPs have a disability, people respond solely in terms of their

experience trying to get benefits. Surely, that is an important piece

of practical knowledge, but we should not let government bureaucrats

who are often the source of our oppression define our identity.

Whether an LP can get what they need matters very much, but whether or

not an LP identifies as a person with a disability should be an

entirely separate issue. As long as we keep defining disability in

terms of how we are marginalized (what we CAN'T do), we will always BE

marginalized.

My point is, I don't get SSI and have no idea if I would qualify, but

I am PROUD to say that I have a disability. For me, having a

disability isn't about what I can't do, but about how I experience the

world in a way that is common with other people that have a

disability. I don't see disability as a bad thing, but as an identity

like latino or gay. Sure there is stigma and stereotype associated

with the disability identity just as there is negativity associated

with any identity, but the disability identity CAN be powerful and

even beautiful.

That was my only point. I didn't mean to offend anyone.

> > What confuses me about your posts, Joe, is whether you are criticizing

> > people for getting on the " government dole " and sharing the tricks of

> > the trade for doing so. I, for one, am not going to criticize anyone

> > who feeds their family or gets them medical insurance (sort of

like the

> > quandary LPA finds itself in the entertainment vs. self respect

argument.)

>

> I have no objection to that, and I apologize if that was unclear from

> what I wrote. I do think, however, that we (not LPs, or the disabled

> community, necessarily, but society in general) are too quick to decide

> that government standards are what make us disabled or not. That is

> perhaps at odds with our ability to self-identify as disabled.

>

> As you said, the hoops that the SSA puts in front of people before they

> can receive benefits they're entitled to are ridiculous. That shouldn't

> limit the ways in which we describe our community, though.

>

> Ian

>

[Guest guest]

No offense taken, I just like to have this Socratic dialogue with you, Joe.

And I wanted to make you clarify your position. (I'm giving you practice

for your thesis defense).

I agree, disability is not a four-letter word, and we should embrace being

disabled with pride. To me it means that I live in a world that was built

for someone else. Sort of like being an immigrant in foreign country.

Naturally, you are going to gravitate toward those who speak same language.

Being part of the disability community at large is like meeting everyone who

speaks the same language.

Staying with the same analogy, SSI is like asking for a translator or at

least a language dictionary. It's a shame when the government makes you do

tricks to get it.

Bill

On 7/26/07, Joe <joseph.stramondo@...> wrote:

>

> Ian hit the nail on the head here. I did NOT mean that SSI shouldn't

> be available to those who need it. I realize that I am writing these

> things from the a position of extreme privilege as a young, upper

> middle class Caucasian male. It's likely that I have this ability to

> be so idealistic because of that position of privalege.

>

> However, my point was not to criticize people that get SSI! Rather,

> my point was to say it troubles me that when the question is raised of

> whether LPs have a disability, people respond solely in terms of their

> experience trying to get benefits. Surely, that is an important piece

> of practical knowledge, but we should not let government bureaucrats

> who are often the source of our oppression define our identity.

> Whether an LP can get what they need matters very much, but whether or

> not an LP identifies as a person with a disability should be an

> entirely separate issue. As long as we keep defining disability in

> terms of how we are marginalized (what we CAN'T do), we will always BE

> marginalized.

>

> My point is, I don't get SSI and have no idea if I would qualify, but

> I am PROUD to say that I have a disability. For me, having a

> disability isn't about what I can't do, but about how I experience the

> world in a way that is common with other people that have a

> disability. I don't see disability as a bad thing, but as an identity

> like latino or gay. Sure there is stigma and stereotype associated

> with the disability identity just as there is negativity associated

> with any identity, but the disability identity CAN be powerful and

> even beautiful.

>

> That was my only point. I didn't mean to offend anyone.

>

[Guest guest]

Yes, Joe, I must agree with Rose. I am sure you hadn't intended for

your words to come across as they did...yet your words had a negative vent to

them. There are some of us who have not been privilaged...and I am aware of

other crushing situations in our community than my own...

Despite seven spine surgeries and twenty-nine others, I struggled for

nearly thirty years to keep working inbetween all my medical challenges. I

did not want to give up all my years of work as a theatre set designer...to

have managed to have come so far despite all the struggle, and lose it? Yet

the time came when my broken body could do no more, and I HAD to.

At my lowest point, in desperation, I applied for disability. When I

applied, one was not allowed to have worked at all during the previous 3-6

months. But what if one has no other source of income and nowhere else

to go? So we are talking desperation here.

Only to then be denied time after time due to the unfairness within

our system, which boggles the mind at times by the lack of consistency which

abounds. Some get it right off, many others, do not. Some get it for very

little wrong, and others with lots wrong, do not. And the whole process is

also more demoralizing to struggle through than words can begin to express.

Yet

Rose came closest to describing those very feelings below.

Adelaide

In a message dated 7/27/07 6:25:19 A.M. Eastern Daylight Time,

RMBJustice@... writes:

Then why refer to it as " charity " ? By coming from your self-descrebed

position of privilage you probably have never gone through the soul

crushing experience of applying for assistance when you are physically

at your weakest.

If your point was not to criticize, why select a term that is heated?

************************************** Get a sneak peek of the all-new AOL at

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[Guest guest]

>

> Ian hit the nail on the head here. I did NOT mean that SSI shouldn't

> be available to those who need it. I realize that I am writing these

> things from the a position of extreme privilege as a young, upper

> middle class Caucasian male. It's likely that I have this ability to

> be so idealistic because of that position of privalege.

>

> However, my point was not to criticize people that get SSI!

Then why refer to it as " charity " ? By coming from your self-descrebed

position of privilage you probably have never gone through the soul

crushing experience of applying for assistance when you are physically

at your weakest.

If your point was not to criticize, why select a term that is heated?

Rose

[Guest guest]

I was using the disabilities studies jargon and probably should have

been more careful with my language, so as not to offend people who are

not familiar with it. There are a few ways to see what a disability

IS and there are corresponding policies for each model. I was

alluding to what is called the Charity Model.

A rough and dirty summary for those who may not be familiar with the

language: There is the medical model that says the problem of

disability is biological and should be fixed with technology (for

dwarfism that would things like limb lengthening or hormone

treatment). The social model says differences become disabling

because of the way society is designed and it our right as people w/ a

disability to have society redesigned (like the work that has been

done to lower ATM machines and public toilettes). The cultural model

says that disability is a culture that can be developed and celebrated

as a unique and beautiful way of life (comedy acts about dwarfism in

the LPA talent show is an example of LP culture). Then, there is also

the charity model of what a disability is. It says that disability is

a tragedy and the appropriate response it charity rather than rights

(The Jerry telethon is probably the best example of this model

and does a lot to dis-empower people with disabilities).

Now, I didn't mean to say that SSI is a form of charity that people

should not accept. It should not be a charity at all, but a

government safety net for those who are in transition. However, I

stand by my statement that the PROCESS of applying for it is very much

centered on the charity model of disability and so we should not

define what disability IS based on this process.

> >

> > Ian hit the nail on the head here. I did NOT mean that SSI shouldn't

> > be available to those who need it. I realize that I am writing these

> > things from the a position of extreme privilege as a young, upper

> > middle class Caucasian male. It's likely that I have this ability to

> > be so idealistic because of that position of privalege.

> >

> > However, my point was not to criticize people that get SSI!

>

> Then why refer to it as " charity " ? By coming from your self-descrebed

> position of privilage you probably have never gone through the soul

> crushing experience of applying for assistance when you are physically

> at your weakest.

>

> If your point was not to criticize, why select a term that is heated?

>

> Rose

>

[Guest guest]

I think we're blending two issues. Here's my take:

As an LP, I have always had limitations, and have more as I age - whatever

model you want to use to describe disability, there are things that most people

can do that I cannot. How I have approached each limitation is to find a way to

do it that works for me: stand on a stool, put extensions on pedals, allow more

time to walk to a destination . . . whatever. This involves how I veiw myself:

I have physical differences, I have to do things differently, but I don't think

of myself as " broken. " When I have run out of options - (for example) I can no

longer climb onto a stool, I have too much pain to work, my previous solutions

no longer work - I have to communicate that to someone in a negative sense:

This is VERY difficult. It goes agaisnt the philosophy I've lived all my life.

It's hard for me to (1) admit there's anything I can't do or figure out how to

do and (2) to ask for help in a way that explains to an uninformed person why I

need help. When the

person/agency I'm asking works on the assumption that people with disabilities

(or people generally) just ask for anything they can get whether they need it or

not, then I'm angry at the suggestion that I would ask if I didn't need it,

frustrated because I still don't have the help I need and frustrated in my

attempt to communicate with someone whose assumptions are wrong.

The OTHER issue: who is entitled to ask for government (or other) help and

who isn't: we could go on forever about this, especially depending on one's

political outlook. I believe that most LPs (and most people generally) want to

work and do so as long as they can, and that they should be taken seriously when

they ask for help. Politically, I believe a society should lend a hand to those

who need it - or are we still putting the old people on blocks of ice to just

float away? Of course there are people (LP and everyone else) who are basically

deadbeats and will take whatever they can get, and we need to try to screen them

out. But it's important to continue to treat people who are just in a bad spot

and need a hand with dignity and resect.

Here's something to think about: The head of a local mission agency (run

collectively by 60+ churches in the area) told us this story. A young couple

came in and wanted money for bus tickets. They had come with friends hearing

that there was construction work here, but found none. Their friends were going

on to Houston; they just wanted to go home, but were flat broke. Mr. L (the

head) said, " Is there somewhere for you to go when you get home? " They said,

" Yes, Aunt A. will take us in and we can start again. " Mr. L: " Can I call Aunt

A? " Young couple: " Well, she doesn't have a phone. " Mr. L is getting

suspicious - people who give money to the mission expect it to go to those who

need it, not people just looking for an easy touch. He felt like the two were

in a bad spot and wanted to help them, but if they were just drifting aimlessly

without anywhere to go, it was nothing more than a very temporary solution to

give them money, or even put them on a bus himself.

He tried once more: " Is there someone in your aunt's neighborhood I can

call? " They thought about it and then said, " Yes, Mr. B. has a store near her

and he'll tell her. " Mr. L called Mr. B, who immediately said, " Absolutely!

Send them home, we're all worried about them. Aunt A will take them in. " So

Mr. L. took them to the bus station, put them on the bus, and gave them money to

eat with. He later got a note thanking him.

My point: sometimes to an outsider (if the case of an LP, especially one who

is ignorant), a situation may look fishy. But that doesn't mean there isn't a

genuine need.

And as Adelaide pointed out, sometimes there is no Aunt A or anyone else to

turn to.

Something to think about . . .

Alyce