MDA Telethon

[Guest guest]

May I inquire

just HOW the

TV station was NOT handicap friendly? Was this Ch. 3???? ~ G

When Barrie and I arrived at the station, (yes, KEYT3) we were aided up a steep

ramp next to concrete stairs with no hand rails on either ramp or stairs. We

were escorted across a small lobby, out the back and down a very wide set of

wooden steps with a high, flat 2 x 4 hand rail. They were not steps that I

would try to use without help from another person. We were then on the patio.

There were chairs, tables, shade and food there, as well as a fantastic bird's

eye view of the city. However, to get into the Telethon area (in the basement),

you had to negotiate another steep ramp (nearly 40-45%) with no handrail. I

clung to the side of the wall to maintain control. We discovered on our own

that there was a set of carpeted steps with handrail, which went from the

basement to the restroom hallway which was at lobby level. I really didn't pay

much attention to the size of the restroom stalls, they were probably large

enough for a wheelchair, but what I did notice was that the toilet was much

lower than standard.

We were told later that there was a path around the perimeter of the station for

wheelchairs which took you to the back patio. I had a sore knee and elected

not to check out the 'long route' for our exit, but opted to ask for help from

two people to walk/lift me up the stairs.

Convenient parking was a problem known about in advance, so Barrie's husband

dropped us off and picked us up. Barrie is a CMT friend from MDA Support Group.

Ruth

[Guest guest]

I think it's a real individual choice. My niece and her parents love doing it.

By the time I was 11, I was getting uncomfortable with it and felt used nd

eventually degraded.

If you choose to, be strong in your role as her advocate and try to re-direct

the negative stuff...pity, condesention, low expectations of success, and the

courageous hero pedestal...and just have fun with a little stardom. The big

picture (how the telethon portrays disabilty) is ultimately your daughter's

issue to grapple with when she's older.

Alana

[Guest guest]

I wouldn't be opposed to doing it, as long as you are comfortable with

the fact they might edit what you say to increase " emotional

intensity " . I was local poster kid and during recorded interviews they

inevitably cropped out my upbeat statements. They also arranged things

for the absolute cheesiest camera shots. (In one clip I had to stare

out a window, complete with simulated rain, and watch some non-disabled

kids happily stomping in puddles.) But I wouldn't say being a poster

kid was bad. Actually a lot of the time it was quite fun. And who

knows, you might be able slip some positive stuff past the censors!

Jenn

jstalin02 wrote:

> Sorry, I know this was a topic that created a lot of lively

> discussion here lately, but I wanted to get everyone's opinion on

> something. We just got a call from our local MDA office asking if we

> would appear on our local TV station's MDA telethon on Labor Day.

> They want to interview us with our daughter who is 16 months old and

> just diagnosed with SMA last year. We were thinking it might be a

> worthwhile opportunity. I know some of the people who post on this

> forum particitated in MDA events as a child. What do you think?

> Should we go for it?

>

> Thanks,

> Jerry

--

Jenn Malatesta

--------------

My web page: http://www.isoc.net/brokeninside/nekrosys/

------------------------------------------------------------

Philo of andria:

" Be kind, for everyone you meet is fighting a great battle. "

[Guest guest]

Hi Jerry. Everyone here has different feelings on MDA. I

have benefited alot from them with my son. He too has SMA.

My son and I were on our local telethon 2 years ago. Being

on the telethon hasnt changed anything for us. It made me

feel like I was doing my part to increase awareness and

help our children and the adults. The research with MDA

has gone along ways for a bunch of these diseases. It is

getting exciting with all the new breakthroughs.

Our local firedepartment has a boot drive each year, as

others do in the country, I take to get his pic.

made with them so they can put it in the paper. It helps

with donations when the public can put a face with the

cause. I try to do my part, because I want to. We werent

on last year and wont be on this year. We will be out of

town. It isnt a big deal. It is strictly up to you!

Take Care and God Bless!

Marcy K.

" jstalin02 " <jstalin02@...> wrote:

>Sorry, I know this was a topic that created a lot of

>lively

>discussion here lately, but I wanted to get everyone's

>opinion on

>something. We just got a call from our local MDA office

>asking if we

>would appear on our local TV station's MDA telethon on

>Labor Day.

>They want to interview us with our daughter who is 16

>months old and

>just diagnosed with SMA last year. We were thinking it

>might be a

>worthwhile opportunity. I know some of the people who

>post on this

>forum particitated in MDA events as a child. What do you

>think?

>Should we go for it?

>

>Thanks,

>Jerry

>

>

>

[Guest guest]

and I were highlighted one year when I won the state's MDA Personal

Achievement Award. They came to our home and to my work.

I feel it like it was good for people to see we are real people trying to

live life to the fullest despite our challenges. Yes, it may bring a tear

to the eye but is it so bad when someone's story touches your heart? I

think not.

I say do it.

Lori

MDA Telethon

Sorry, I know this was a topic that created a lot of lively

discussion here lately, but I wanted to get everyone's opinion on

something. We just got a call from our local MDA office asking if we

would appear on our local TV station's MDA telethon on Labor Day.

They want to interview us with our daughter who is 16 months old and

just diagnosed with SMA last year. We were thinking it might be a

worthwhile opportunity. I know some of the people who post on this

forum particitated in MDA events as a child. What do you think?

Should we go for it?

Thanks,

Jerry

[Guest guest]

When I was younger I was an MDA poster child. We did all sorts of

interviews, radio shows, blahblahblahblah. Now that I look back on

the tapes, I laugh. I think it's pathetic and ignorant -- the editing

jobs and portrayal and pity-the-poor-girl attitude. I didn't realize

it when I was that little. Yeah, they're making money " for a good

cause. " Maybe some people actually see that money. Whenever we asked,

we didn't get help. That's why my mom stopped eventually. But all in

all, it did help my social skills and was a ton of fun personally

(plus my aunt gave me a trip to all you can eat ice cream in her

kitchen everytime I did it)! So I suppose it's always your own

choice. Hey - give it a try. If you don't enjoy it the first few

moments, get up and walk away.

~Kendra

> Sorry, I know this was a topic that created a lot of lively

> discussion here lately, but I wanted to get everyone's opinion on

> something. We just got a call from our local MDA office asking if

we

> would appear on our local TV station's MDA telethon on Labor Day.

> They want to interview us with our daughter who is 16 months old

and

> just diagnosed with SMA last year. We were thinking it might be a

> worthwhile opportunity. I know some of the people who post on this

> forum particitated in MDA events as a child. What do you think?

> Should we go for it?

>

> Thanks,

> Jerry

[Guest guest]

Alice,

Thanks for posting the article on the MDA telethon..I've actually had a chance

to meet the person who does the Voice Captioning and he did demonstrate at one

of our HLA-CI (Central Iowa) meetings..I thought, WOW, this is truly amazing to

see different types of captioning going on nowadays. "

I am in the Des Moines Metro Area and didnt see that in the newspaper when i

checked online but thanks again.

(aka JD1176 hearsnow on )