Re: From Nick: what really matters: thoughts on inclusion and freedom (long and rambling) 01/04

[Guest guest]

Nick I love you!!

(signing up for Nick's fan club at this moment)

Love,

On 1/17/04 7:54 PM, " Nick Dupree " <nickdupree@...> wrote:

> Hi SMA list,

>

> Nick Dupree here,

>

> I've been thinking a lot about " community inclusion " a lot as I've been

> struggling to include myself in real life again and thought it'd be cool

> to share my thoughts here. I know a lot of you here have expressed

> problems with getting out there and including themselves in life, not

> enough help, homebound rules, etc., I relate a lot to that and I think

> this will resonate on this list.

>

> As I'd mentioned in my introduction before, in Feb. I won my huge

> two-year battle with Alabama Medicaid and they set up an extension

> waiver for in-home care for people aging out of EPSDT at age 21, saving

> myself and making slots to save 34 others from institutionalization

> and/or death. I made quite a splash. However, I emerged from this great

> " victory " to realize that what I had won was a life crusted in

> contradictions, a chance to sit at home alone more, and I realized I've

> not really had a life since I got severely disabled in 1991 (many never

> realize this). So as I write this I'm struggling and progressing to

> secure for myself some of the " community inclusion " I preached for all

> people in Boston, DC, Chicago and Luther King's church in

> Montgomery ( click here for details on this speech:

> http://nickscrusade.com/AlabamaDisabilitySummit.JPG -- that's a bad

> photo though. This one is better --->

> http://nickscrusade.com/NickinDC1.jpg )

>

> Recently I've learned:

>

> Isolation is at the heart of all disability issues.

>

> It's so true.

>

> Building accessibility

> employment

> segregation / institutionalization

> inclusion

> equal access in all forms

>

> All disability issues are addressing the underlying problem of isolation

> and exclusion, attacking the problem that so often human society has

> excluded those that are different.

>

> This idea brought me back to my speech in August for the Alabama

> Disability Summit at Luther King's old church. I compared the

> Olmstead and Brown v. Board decisions, pointing out both attack

> segregation as assuming inferiority and unworthiness of those excluded.

> I'm sure this link has been made countless times and I'm offering

> nothing new here.

>

> Brown v. Board

>

> " To separate them from others of similar age and qualifications solely

> because of their race generates a feeling of inferiority as to their

> status in the community that may affect their hearts and minds in a way

> unlikely ever to be undone. "

>

> Olmstead v. LC

>

> " The identification of unjustified segregation as discrimination

> reflects two evident judgments: Institutional placement of persons who

> can handle and benefit from community settings perpetuates unwarranted

> assumptions that persons so isolated are incapable or unworthy of

> participating in community life, cf., e.g., v. , 468 U.S.

> 737, 755; and institutional confinement severely diminishes individuals¹

> everyday life activities. "

>

> It's a powerful, true, link.

>

> Another thing that really connected with me was a posting of a new study

> about the affects of exclusion on the human brain.

>

> *quote*

> " Naomi I. Eisenberger, a scientist at the University of California, Los

> Angeles and the first author of the study published Friday in the

> journal Science, said the study suggests that the need for social

> inclusiveness is a deep-seated part of what it means to be human. "

> http://snurl.com/2mi2

> *quote*

>

> This is so very true. And it's obvious.

>

> If human beings WEREN'T hard-wired to need and seek out social

> connection, if human beings were content to sit alone in caves and

> subsist, our species would not have survived past a few generations.

> People wouldn't have been hunting in large enough groups to survive, and

> there would be little reproduction. Inclusion is a fundamental human

> drive, along with the things that go along with it (drive to mate that

> few will talk about but is killing me, etc.)

>

> All humans have to have the supports required to fulfill their needs for

> food, safety, and INCLUSION, and be given the opportunity to contribute.

> We want equal access. Exclusion is unnatural, and as the new study on

> exclusion and the human brain indicates, causes people a lot of pain. I

> really identify with that. As a guy who's been subsisting in his cave

> with nothing but the medical model (nurses) supporting him and little/no

> support to get out and integrate for the last 12 years, I can confirm

> that isolation hurts a lot. It's hard to explain to those that have

> never experienced it, but it feels kind of like an ice pick rending your

> soul, or like your heart is trapped inside a small, invisible piranha

> tank and no matter how hard it fights, it can't break free. It is so

> painful that I have to keep working to change it, or I won't have the

> strength to do more activism. That's intense I know, and is probably too

> much to say here, but it's true. But we don't want pity, we want human

> rights, we want equal access/self-determination and we want it now.

>

> In this case, the personal is absolutely the political.

>

> Personal actions are what matter, and send louder messages than any

> words. Inclusion / exclusion are very powerful actions and people with

> disabilities detect it and know what's real. When a girl hugs me ... the

> way she did (long story) ... that's real, and a meaningful and powerful

> action. When someone drives me to hang out with them and their friends,

> that sends a message to me. Feeling the rain, free in the world, matters

> to me. When a guy in my poetry class agrees to come over and talk and

> then actually does it, that means something. When students say they're

> too busy studying for me, but minutes later talk about all the cool

> stuff they're going to do this weekend, that matters. Emails never

> answered, matter. When people tell me I can't come to their party, I'm

> not invited, that matters. People can be very cruel. It wasn't easy at

> all last semester. I have too many feelings, too tense to sleep, so I

> don't much. When my nurses threaten to quit if I take a class I need to

> graduate next semester that happens during their shift change, because

> it'll change their schedules, that is an action. When I get an award in

> DC, when the governor shakes my hand in Montgomery, but I spend the next

> semester eating lunch alone and in my room most weekends, those are

> messages, conflicting messages. All these messages coming at me are

> real, and mean more to me than any words said.

>

> I don't know what to make of the conflicting input coming in, being able

> to change Alabama and speak around the country but not being able to go

> to the coffee house down the street, but writing about how it feels, how

> bizarre it all is, it makes for good poetry!

>

> My poetry professor liked my poems so much he wants to get a book deal

> for them later. That shocked me. Two of my poems were already published

> in the college literary magazine.

>

> If you want to just get a straight view of the real things I'm facing,

> here are all of my poems http://nickscrusade.com/Poetry/

> but I don't want to ram Nick poetry down your throat or anything.

>

> My poetry is pretty straightforward so mostly it can be taken literally,

> but also there are deeper things underneath. Also, read them line by

> line, slowly, because I write them so each line can be said in one of my

> ventilator breaths.

> I love poems because it's a way to talk about my life and it be

> acceptable, a way for me to speak out and not be afraid. Poetry is a

> good outlet. I wrote a poem about the feeling the rain too.

>

> The issue of a real life for people with disabilities is what really

> matters, that is what inclusion and freedom and self-determination are.

>

> That's what all this advocacy is for, so I and others can feel freedom

> and rain.

>

> I'm still doing my activism, so far this month I was on a conference

> call with Senator Kerry, met with my US Congressman Jo Bonner about

> cosponsoring MiCASSA, and I hope to keep speaking around the country,

> growing my influence.

>

> I'll be around here at home, going to college classes (I'm taking 12

> credit hours), writing, giving speeches, trying to meet people,

> overhauling my web site and more and I'd like to hear from everyone, so

> reply away.

>

> Thanks for letting me participate on this listserv, I hope I'm somehow

> helpful.

> I have lots more to say later.

>

> I won't stop trying.

>

> Best,

>

> Nick

>

> http://NicksCrusade.com

>

>

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[Guest guest]

Why wow?

And thanks for being one of the few to reply.

I'm extremely, extremely depressed today.

Nick

a Bishop wrote:

>Nick,

>Wow. Just wow. -a

>

>

[Guest guest]

Hey Nick,

I've had every intention of replying to your post, these last couple days have

just been busy with school and whatnot. But wow, I have that email saved in my

AOL, because it's just too well written to delete. You had me fighting back

tears. I can't even believe how right on you were at expressing so many of the

thoughts and feelings that I deal with all of the time but usually try to

ignore. Compared to a lot of the stories I hear on this list and other places,

I'm relatively lucky with the care I receive and the abilities I still have. I

could complain about those categories a lot, but I also can count a lot of

blessings. The biggest issues in my life can't be solved by any sort of medical

advances or governmental support. The issues that really hurt are the social

ones. It's hard to often feel like I don't matter to anybody. It's hard to spend

weekends alone. It hurts to be excluded from social plans, or have promises

broken, or phone calls and emails go unanswered. I can't say how much of this is

directly due to my disability and how much is just me and my life. But I

appreciate your honesty in speaking candidly about all these things. I always

feel like it's somehow not allowed to admit that certain things hurt my

feelings. Showing physical weakness is bad enough, but showing emotional

weakness is much worse. And that doesn't even make any sense at all, because

feeling hurt isn't weakness, it's just human. Anyway, I'm kind of rambling

stream-of-conscious style, but I just wanted to say thanks for your post. I can

really identify. I also really admire the work you've done in advocacy. That's

incredible, and I'm so glad you've been able to see some positive results. If

you want to chat sometime, feel free to email me off-list. I think I'd enjoy

getting to know you better!

~e

[Guest guest]

e,

Thanks, really need the kind words. If you want to chat, please message

me, my screen name is NickSD on AIM and AOL, and it is NicksCrusade on

Messanger.

From the darkened lair,

Best,

Nick

PurplGurl3@... wrote:

> Hey Nick,

>

> I've had every intention of replying to your post, these last couple

> days have just been busy with school and whatnot. But wow, I have that

> email saved in my AOL, because it's just too well written to delete.

> You had me fighting back tears. I can't even believe how right on you

> were at expressing so many of the thoughts and feelings that I deal

> with all of the time but usually try to ignore. Compared to a lot of

> the stories I hear on this list and other places, I'm relatively lucky

> with the care I receive and the abilities I still have. I could

> complain about those categories a lot, but I also can count a lot of

> blessings. The biggest issues in my life can't be solved by any sort

> of medical advances or governmental support. The issues that really

> hurt are the social ones. It's hard to often feel like I don't matter

> to anybody. It's hard to spend weekends alone. It hurts to be excluded

> from social plans, or have promises broken, or phone calls and emails

> go unanswered. I can't say how much of this is directly due to my

> disability and how much is just me and my life. But I appreciate your

> honesty in speaking candidly about all these things. I always feel

> like it's somehow not allowed to admit that certain things hurt my

> feelings. Showing physical weakness is bad enough, but showing

> emotional weakness is much worse. And that doesn't even make any sense

> at all, because feeling hurt isn't weakness, it's just human. Anyway,

> I'm kind of rambling stream-of-conscious style, but I just wanted to

> say thanks for your post. I can really identify. I also really admire

> the work you've done in advocacy. That's incredible, and I'm so glad

> you've been able to see some positive results. If you want to chat

> sometime, feel free to email me off-list. I think I'd enjoy getting to

> know you better!

>

> ~e