Re: Developmental Disability Awareness Month

February 16, 2011

Laurie,

When I was president of my local ASA chapter, we did all of these things and

more for National Autism Awareness Month. One of our members was chief

librarian at Crete's public library(a former ASI president, no less)made sure

all our communities libraries had plenty of autism resource material and schools

had displays. Much of what you pulled together in such a short time we planned

for months but....it takes work. I had a committee to take care of it and we

all spread out and took care of our own little corners and it worked well.

I didn't know March was DD awareness month. Actually, since I'm working with a

choir of adults with DDs coming in from New Jersey to Chicago and singing in

March at the national American Choral Directors Association (this is a really,

really big deal)convention, I will make sure people that should know about this,

will. And have been trying to get coverage...this will be perfect!

Perhaps if we know when things happen, things like this can be qu-ed up and

ready every year---when is National Downs Syndrome Awareness Month? April is

autism but what about CP and others? Folks, tell us if you know.

Marie

>

> Did you know that March is National Developmental Disability Awareness Month?

I learned of this about 2 weeks ago, from an ARC of the United States

e-newsletter that mentioned it. There were a few suggestions for ways state

chapters or service providers or other members could work on increasing

awareness in their state or local community. I thought I'd see if my fellow

NapervilleWorks colleagues were interested; and wow, did they ever rise to the

challenge. Here are just a few of the things we've got in place as of today

with more to come. Thought I'd share these with you in case anyone wants to

replicate in their own communities.

>

> There's a great website with a full range of materials & ideas at low or no

cost: www.publicimagesnetwork.org. It has posters, templates for press

releases, church bulletin inserts, PSAs and more. The theme this year is

'Together'. Here's what we have organized to date:

>

> 1. City Proclamation designating March as DD Awareness Month in Naperville

> (City Council meeting March 1 -- thank you Councilman for getting that

date reserved for us)

>

> 2. March 24th Transition Forum scheduled in Council Chambers, highlighting how

together, as a community, we all win when residents with DDs work, volunteer,

recreate, worship and vote together. More on this as details are finalized

(thanks again Councilman and ADA Coordinator Marita Manning).

>

> 3. Month long displays confirmed at all Naperville Public Libraries, with

resource materials, children's books, software and other items available for

checkout.

>

> 4. Month long displays at each of our public school's Learning Centers with

same as above.

>

> 5. Press releases going out to all faith communities in Naperville with a

sample bulletin insert describing ways a congregation can consider celebrating

their members with developmental disabilities

> (thank you to our City's ADA Coordinator, Marita Manning, for her help with

this)

>

> 6. Article about March as DD Awareness Month in local magazine Positively

Naperville (thanks again Marita!)

>

> There may be more, but not bad for a week and a half of knowing about it.

Imagine what we can do next year.

>

> Let me know if anyone else is doing this & if you've found better sources of

information or promotional activities. I believe this falls under the proverbial

'building local capacity' heading, don't you?

>

> Take care,

> Laurie

>

February 17, 2011

It's interesting to have a conversation about this. IDADD has become a place

lately for more 'serious' things. But just getting disability--and what it

means--OUT THERE paves the road for all of the other serious things. It's easier

to get people to listen when they know something about your problems/challenges

in a non-threatening way.

My forte has always been " putting a face on disability " --something I like to do

and do do every year for National Autism Awareness Month. Little things make a

difference! This year, I have the new " 's World:A Book for Kids About

Autism " to promote--not just because it's about our son, but because it's a

children's book about autism! My editor at the Tribune is interested in doing a

piece for the Sunday section.....I'm working on it! BTW, the first edition of

the book was written when our family was living in BERWYN, B., and

pictures of Russ swinging were taken in Proska Park!

I did have a committee to help me and some years, we made autism awareness

ribbons and gave them to our mayors and city councils. We spoke in the schools.

Had displays in libraries. We had a banner for our overpass in the middle of

town...little things that meant a lot in terms of awareness.

Since I'm not involved any more and our old chapter seems to not be active, I

haven't noticed anything---that I haven't done anything on a local level--it

seems no one else is doing anything around here.

The choir of DD adults I've been working with, singing in March, are a way of

getting DDs 'out there' and I'm working on getting PR for them while they are

here. Sometimes, being at the right place at the right time with the right

people makes a HUGE difference. Timing is everything, so knowing October is

National Downs Syndrome Month is helpful for the future.

Perhaps, keeping a list of these months and being pro-active with plans already

in place and suggestions--library displays, contacting city councils, etc.--is

something we can do here. And Laurie's correct--some of this is simpler than

planning a child's birthday party!

Marie

>

> >

>

> > Did you know that March is National Developmental Disability Awareness

Month? I learned of this about 2 weeks ago, from an ARC of the United States

e-newsletter that mentioned it. There were a few suggestions for ways state

chapters or service providers or other members could work on increasing

awareness in their state or local community. I thought I'd see if my fellow

NapervilleWorks colleagues were interested; and wow, did they ever rise to the

challenge. Here are just a few of the things we've got in place as of today

with more to come. Thought I'd share these with you in case anyone wants to

replicate in their own communities.

>

> >

>

> > There's a great website with a full range of materials & ideas at low or no

cost: www.publicimagesnetwork.org. It has posters, templates for press releases,

church bulletin inserts, PSAs and more. The theme this year is 'Together'.

Here's what we have organized to date:

>

> >

>

> > 1. City Proclamation designating March as DD Awareness Month in Naperville

>

> > (City Council meeting March 1 -- thank you Councilman for getting

that date reserved for us)

>

> >

>

> > 2. March 24th Transition Forum scheduled in Council Chambers, highlighting

how together, as a community, we all win when residents with DDs work,

volunteer, recreate, worship and vote together. More on this as details are

finalized (thanks again Councilman and ADA Coordinator Marita Manning).

>

> >

>

> > 3. Month long displays confirmed at all Naperville Public Libraries, with

resource materials, children's books, software and other items available for

checkout.

>

> >

>

> > 4. Month long displays at each of our public school's Learning Centers with

same as above.

>

> >

>

> > 5. Press releases going out to all faith communities in Naperville with a

sample bulletin insert describing ways a congregation can consider celebrating

their members with developmental disabilities

>

> > (thank you to our City's ADA Coordinator, Marita Manning, for her help with

this)

>

> >

>

> > 6. Article about March as DD Awareness Month in local magazine Positively

Naperville (thanks again Marita!)

>

> >

>

> > There may be more, but not bad for a week and a half of knowing about it.

Imagine what we can do next year.

>

> >

>

> > Let me know if anyone else is doing this & if you've found better sources of

information or promotional activities. I believe this falls under the proverbial

'building local capacity' heading, don't you?

>

> >

>

> > Take care,

>

> > Laurie

>

> >

>

February 18, 2011

Hi all:

Hate to be a " party pooper " but I don't really see the point in Developmental

Disability Awareness Month, or Autism Awareness Month or any of that...

When I read the postings this morning it really bothered me and I have thought

about it all day.

I guess I would like to live in a different world. I would like to live in a

world where we didn't have to have special days for " special " people. After

all, people with autism, and people with other intellectual disabilities are

just people. I would rather be celebrating community inclusion month...every

day of the year. Real community inclusion would not single any group out for a

special day.

I would like to live in a world where everyone is equal and we wouldn't expect

the Mayor to pat our little darlings on the head once a year and feel really

good about " recognizing " people with " special needs. "

I am sorry if I sound a little cynical, or angry or negative. Those who know

me, know that I am typically not any of those things. I just want our loved

ones to be part of the world at large; to blend in and not stand out; to not

require a special proclamation to be able to take their rightful place in the

community.

Just my opinion...

Ellen

Ellen Garber Bronfeld

egskb@...

February 19, 2011

Hi et al:

Sounds like Cicero is getting it right.

If they are employing people of all abilities, that speaks volume for their

leadership.

Kudos to the Mayor of Cicero!

Ellen

Ellen Garber Bronfeld

egskb@...

February 19, 2011

It may seem foolish to some but I have seen people converted just by knowing

someone, or OF someone, who has challenges. And as Laurie so eloquently puts

it, Awareness Months are tools--nonthreatening tools--in a box that should

contain other things as well.

Just as all of our have had to come to grips with our loved ones challenges, we

have to realize the kind of world we live in.....and, we have to 'work the

room'. Awareness Months are opportunities to 'work the room'. We shouldn't

have to, but it is a " given " and my goal is to, one day, have it a " given " that

people--our loved ones--are accepted, have jobs and housing and fulfilling lives

in our communities WITHOUT having to make a big deal out of it. But it isn't

THAT DAY.....yet.

I've spent the last 20 years of my life--of my family's life--trying to get NT

folks in the world to accept my son as a person, a real person. He lives in a

family who loves him and who accepts him. He's different but he's the same as

everyone else, as is our family. THAT'S why Chuck wrote the book and

why we agreed to update it. And, our whole family has opened our LIVES to

strangers in order to do this. Our privacy, our home, our lives have been looked

at---and you haven't LIVED until you've had to justify something in your home

with an editor, believe me. I wish there had been no need to write it, that

people accepted for being who he is and every day was autism or DD

awareness day but that's not the world we live in.

I don't like to be patronized but many of the legislators in my community do

patronize us, me, when they learn of 's autism---Al Riley telling me

" folks need this " and " folks need that " , assuming he knows what's best for our

family and our son when he's never really thought of this population as anything

other than a PR opportunity. My goal is to convert HIM every time I see

him--and I see him often, since he's always at events I attend. I am 'working

the room' and always have.

Instead of grousing about Awareness Months, take the opportunities they afford.

If that means speaking with the city council and giving them all metals, then so

be it. Awareness Months pave the way for the things we all want. So grin and

bare it and slap a smile on your face.

Marie

February 19, 2011

I am very unhappy to learn you've had to fight in Berwyn. We lived in Berwyn

from 1985 to 1991, when my husband was a Resident Physician at the University of

Chicago. My mother grew up in Berwyn. My grandmother lived in Berwyn during

the time we did. I had hoped the trail we blazed in Berwyn was still there. I

am sad to know it isn't.

I had to fight for things in the beginning, school district-wise, and had

thought some of things we set in place were still there. It is true, unless you

keep it up, things won't stay and those that come after will have to re-invent

the wheel. And, the " powers that be " don't think we parents of special needs

persons talk and compare notes.

Please always contact me off-list when you need something--I still have contacts

and friends in Berwyn, including a another " special needs mom " whose daughter

with Downs Syndrome was in love with my son and they were classmates from the

age of 5 to about 11....Dolly will know where the bodies are buried, that's for

sure! You shouldn't have to do it alone.

Marie

>

> From: Jerue Family <jeruefamily@...>

> Subject: Re: Re: Developmental Disability Awareness Month

> IPADDUnite

> Date: Saturday, February 19, 2011, 2:44 PM

>

> Â

>

> Dearest Ellen,

>

> I believe we're going to have our first public tiff. Wouldn't we all rather

be celebrating community inclusion every month, every day of the year? Well,

duh, of course you're right! But geez louise, who lives in that world? Maybe

Cicero (wonderful stories, by the way, , about your Mayor) but who else's

community is like this? What this brings home to me is the importance of

leadership at the top, and the vision of that person (or persons) who sets the

tone for your local government, civic groups, faith communities, etc. Currently

in Naperville we have this great guy, Mayor Pradel, who has been Mayor

for the past 20 years or so, he sees his primary role as being 'lead

cheerleader' for our City. He appears at every event in his Naperville tie and

revs up the troops about the latest business ribbon-cutting, how wonderful life

in Naperville is, etc etc. And if that was all we had to worry about, he'd be

doing a bang up job.

>

> However, he has LITERALLY patted my adult daughter on the head, and when I

asked him for a meeting to talk about developing more jobs throughout the city

for people with DDs (he knows she volunteers at the Police Dept), he said 'oh no

no, we don't have jobs...you don't really want her working, do you...have you

tried _____(substitute in here a local segregated day program)?. In other

words, I feel so very sorry for you, I'm full of compassion for your situation,

but lordy no, people like your daughter don't belong out on the streets of

Naperville. Surely she couldn't really work. They need to be protected, taken

care of, blah blah blah. Completely ignorant to the facts of how

parents/caregivers can't keep up as they age, people aren't getting funded for

day programs any more, how much they cost to private pay, the fact that we are

spending six figures to educate these folks, only to have them do what exactly?

Talk about feeling angry!

>

> I also had the pleasure of talking with the CEO of the big social service

provider in our town which touts it's autism expertise. He told me, in a

meeting to discuss the possibility of his agency partnering with my band of

volunteers at NapervilleWorks, he actually said this, and remember he's the head

of the agency...'The City of Naperville is NEVER going to accept having people

with DDs, particularly those with behavioral & communication issues (like my

daughter and half of the autism population) working in their downtown

businesses. It's never gonna happen. I wish you luck, and I hope you prove me

wrong, but I don't believe it will ever happen.'

>

> I went out to my car and actually cried. And cried. And then halfway home, I

started to get really really mad. How dare these people in leadership positions

take this stance? Like they were saying to me, just give up and don't even

try. Resign yourself to the status quo. REALLY?

>

> What's that expression about 'a woman scorned'? Well, as news of these

meetings traveled (because of course I shared the joy) a lot of women friends

(and some men, too) got mad. If these paid public servants were not going to

lead us, we would lead ourselves. And, yes, sometimes we use artificial

'months' or 'days' to help raise awareness in our local communities. But you

know what else it does? It can lead to important new allies apart from the

social service network. More on this later, in another post, because I think

it's worth discussing.

>

> Point is, dearie, I agree with you that if DD Awareness Month (or Breast

Cancer, Animal Shelter, etc days) are the only thing a community does, it can be

reduced to a pat on the head and nothing more. However, when used as a

strategic tool that brings together many organizations within a town, then I

disagree with you that it's dumb -- because then we have the opportunity to

cultivate and yes, give positive strokes to, new allies in our community who are

not a part of the social service world. And those allies, those connections, I

believe, are what will help us all build a better and more inclusive future for

all.

>

> More to come...I'll make a convert of you yet, Ellen Bronfeld!!

>

> L.

>

> From: ELLEN BRONFELD

>

> Sent: Friday, February 18, 2011 10:55 PM

>

> IPADDUnite

>

> Subject: Re: Developmental Disability Awareness Month

>

> Hi all:

>

> Hate to be a " party pooper " but I don't really see the point in Developmental

Disability Awareness Month, or Autism Awareness Month or any of that...

>

> When I read the postings this morning it really bothered me and I have thought

about it all day.

>

> I guess I would like to live in a different world. I would like to live in a

world where we didn't have to have special days for " special " people. After all,

people with autism, and people with other intellectual disabilities are just

people. I would rather be celebrating community inclusion month...every day of

the year. Real community inclusion would not single any group out for a special

day.

>

> I would like to live in a world where everyone is equal and we wouldn't expect

the Mayor to pat our little darlings on the head once a year and feel really

good about " recognizing " people with " special needs. "

>

> I am sorry if I sound a little cynical, or angry or negative. Those who know

me, know that I am typically not any of those things. I just want our loved ones

to be part of the world at large; to blend in and not stand out; to not require

a special proclamation to be able to take their rightful place in the community.

>

> Just my opinion...

>

> Ellen

>

> Ellen Garber Bronfeld

>

> egskb@...

>

February 20, 2011

HI Laurie. I too live in Naperville, and is 18 now and will start

Transition next year. I am appauled at what I just heard from your post in

regards to our City of Naperville leadership. See I have a different take on

this. Tears I often have as well. But if everyone is to believe the rhetoric of

" transparentcy in Government), then I'm sure there exists a non judgemental, or

eneemy- making way to make this public or share this aspect of or current

government. How about an article in the Naperville Sun as well as something

broader like a county wide newspaper? With the appropriate writer, and freedom

of speech, I'm sure this could be done while not getting you run out of town.

Any thoughts? Honestly embarrasment, without them obviously knowing this is

what your goal, is what will institute change, not our tears, nor our asking and

begging. Let's face it, we have asked, we have cried, and we've tried to

partner with them in all the ways we are supposed to. Sometimes it's got to go

beyond that while not making enemies. Sometimes if it is made a situation where

it is easier to go with you then to fight you, works wonders.

just my 2 cents....

Diane S.