Tuesday, September 13, 2005

Warning: Buddy Walk Dilemma

The following post may offend some of you and I apologize for that, however, I wanted to throw it out there so that I can read your positive or negative opinions. I had the opportunity over the weekend to talk with someone who also has a child with Down Syndrome. I respect the man because he doesn’t hold back, he speaks his mind and that’s a quality that I look for in a friend. One of the topics of discussion was the “Buddy Walk.”

I’m sure that many of you are familiar with the “Buddy Walk” so I will go under the assumption that you are. Over the weekend I got to thinking why is it that many of the Buddy Walks are held in out of the way places with very little exposure to the public? Is it the organizers of the Walk or is it the city politicians doing? Why is there very little media exposure for this event, is it the organizers or is it the media? I can tell you that in Pittsburgh our walks are also in out of the way places and there is virtually zero media coverage. I personally have not yet attended a Walk; I have only contributed monetarily to one. That said, I am under the impression that the “Buddy Walk” has many purposes:

(Before I go any further you should know that I am not criticizing anyone. I am merely just trying to get opinions and answers)

1. To bring together parents of children, and adults who have Down Syndrome.
2. To raise money for Down Syndrome research.
3. To promote Down Syndrome awareness.

It certainly is nice to do #1. I can see myself and the kids having a good time. But I’m not sure if #2 and #3 are being done properly. If we were to gain media coverage, this would certainly help with fund raising, it will also help with awareness, they kind of go hand in hand, without one the other won’t be as effective. If you are one who is supportive of the Buddy Walk and want to make number 3 successful, wouldn’t it make sense to hold the Walk in the city, marching down Main Street? There may be cities where this is done, but I haven’t found them yet. After all, the best way to gain attention is to interrupt traffic patterns.

My family and I will probably attend a Buddy Walk one day, but I really don’t feel the need to yet. I suppose that by going to a Walk you’re basically showcasing your child, not entirely, but the feeling is there. As a family, we go to parks, restaurants, movies, the mall, museums, ……….we get out. I think getting out in general is the best way to promote DS, showing people that we do the same things as they do with their typical kids. I understand that it’s a fundraiser, and the point is to bring DS awareness in to the public eye, so my feeling is it needs to be done right or not done at all. Let’s just ask our family and friends to send money to support the National Down Syndrome Society and have one big picnic. Promoting community involvement will allow our our special needs children to blend into our communities. We must be the ones in our daily activities showing the “PUBLIC” that our kids are quite capable of a normal (what is the definition of normal anyway) life just like any other kid.

All we really want is for our children with DS to be happy and be a contributing member of society anyway, right, so why do we need to bring public attention to them. My point is, just go about your business and BLEND IN. If you always draw attention to yourself you will always STAND OUT.

As they say, “the best thing about opinions is that everyone has one”. Isn’t life interesting?


Lori said...

In St. Louis, close to our corner of the universe, the Buddy Walk is a HUGE deal. The St. Louis Cardinals take part, the walk is at Busch Stadium, it gets lots of media coverage, & generally a lot of funds are raised. (It also helps that Albert Pujols has a daughter w Downs, but the walk was big before she was born. Also, there were 3200 people who did it last year!)

It must just depend on the city & who the organizers can get involved. I wonder if anyone has approached the Steelers or Pirate organizations about getting involved? (We have never participated in a Buddy Walk, not for any specific reason other than the 3hr drive to St Louis.)

Anyway, I say all that because...well, I forget! :) Oh, by the way, eggs were cooked for breakfast this morning by our master chef. I love the idea of the chefs hat!

barbara curtis said...

hi Brian -

I've been so busy getting kids off to school and stuff I haven't been visiting anyone for a while. You added a picture! I like it - for some reason I ensioned you as a businessman in suit and tie. Don't have the slightest idea why :)
Anyway, you look like a fun dad. And isn't life with kids the great adventure? I've never been on a buddy walk. The idea just never appealed to me - I'm not a group-identified person. When we lived in California, we had an informal circle of families with kids with Down syndrome and we did social things together periodically - Christmas parties, picnics, bowling - with just whoever could make it. That was fun.

BStrong said...


Business man yes. I wore a suite for many years when I worked for someone else. I swore that if I should ever have my own business that I would leave the suite in the closet at the office and only take it out for important meetings, so that’s where it is today.
Kids certainly do keep you busy. I think that there is a connection between having kids and world time. It seems that after having kids your birthday comes around faster and there is never any time to do the things that need to get done.
I certainly agree about group identity. I just feel that we don't fit in to any one group, and that's fine with us.

I'm not certain that our sports teams were ever contacted about the Walk. Maybe I could pass along that suggestion. Again, I am still undecided about the walk, but if I should get involved I still feel that it should be done in a very public place.

Beckie said...

My family has only taken part in one Buddy Walk...and you're right that it was in an out-of-the-way place. But I figured that two things contributed to that. 1) there is the problem of parking. If you're smack downtown where would all the participants park and how would they get to the site. 2) It involves lots of kids and downtown is a busy place with lots of traffic and lots of opportunities to dash inside a door, get lost etc. I personally wouldn't want to participate in a BW if it was in a busy district because our little 'buddy', who is 7 tends to do the 'dash and discover' maneuver. He runs off very suddenly and doesn't pay attention to how many cars may be coming his way.

But, you're right, a more public place would be good for the awareness goal. I like the sports stadium idea. No moving cars and storefronts etc. I'm glad you reminded me of the BW. I've been so busy I forgot that I wanted to check on the dates for ours.

BTW, we don't happen to be solid groupies, but we do enjoy occasional group activities with other parents who have children with DS. We enjoyed our one BW experience. Chris Burke was there, singing with Joe and John. It was fun.

Tara Marie said...

Hey bstrong....you hit upon a topic that I was just writing about!

I agree, many Buddy walks seem to be in out of the way place [especially if you live in rural areas] and I know that our local walk I have expressed my concern [only to be shot down....another topic][[a group of us are starting an other local support group stemming from these ideas].

The NYC Buddy Walk is fantastic, and we travel into the city to attend. St. Louis, LA and Indianopolis all host amazing Buddy Walks [I'm truly inspired] as well as many other areas that I have not heard about yet.

I think the main reason the NDSS has developed the Times Square Video was to provide media opportunities to every little small community in this great land of ours......having a local child's picture chosen for the 'Bright Lights of Broadway' gives the media a wonderful focal point. [easy to pitch]

I am a former Media relations specialist, and actually a friend of mine, Dr. Carol Mills and I hosted a workshop at the NDSC conference in 2004 regarding 'media relations and getting press coverage for your local group and Down syndrome awareness'

Anyway, I rambled [I'm good at that], but I think that through actions like we all have been doing, Buddy Walks, news articles, websites, blogs, treating our children as they should be treated as members of our family and community[so they are out and about], the new NDSS spots on Nickelodean, children appearing in print ads, reruns of 'Life Goes On'........etc....we will raise public awareness so that someday, seeing a child/adult with Down syndrome will just be part of everyday life!!

Peace, TM

Julana said...

The Columbus BUddy Walk is in its 4th year. It made $150,000 last year, one of the top in the country. It is held at Franklin Park Conservatory, winding around the area where the INternational Ameriflora event was held in 1992. We have a band, local tv and radio personalities, and food vendors. I think a couple thousand attend. Not sure exactly. I have only attended last year's. I have mixed feelings about it. But I think it is find for those who want to do it.

BStrong said...

Julana, Beckie, Tara Marie

Thank you for your comments. I am pleasantly surprised by all your comments. It seems that each Buddy Walk is a little different and its success is based on the organization of each event.
I guess that I kind of expected to receive comments stating that everyone religiously goes to Buddy Walks. That seems not to be the case.

This post is still young so I hope to get a few more comments and opinions.


Kim Ayres said...

I'd not heard of Buddy Walks before, although I guess after reading your post and comments it's pretty obvious what it is.

It looks like the attendant publicity can help raise awareness - and money too by the sound of it, and that has to be for the good. And if that is the purpose, then I agree that you need to look for ways that will maximise that publicity - hitting big city venues, closing streets, creating a carnival atmosphere etc.

And I agree with you about ditching the tie. I remember hearing somewhere, someone talking about how the businessman with a tie is going to work every day with a noose around his neck!

Lori said...

We feel the same way. Jackie is a great kid and she's treated like the rest of the family. She's a wonderful little girl who is not disabled, just differently abled. And believe me, she's able to do alot...she keeps me hopping! I enjoy your blog.

Stephanie Bissol said...

Hi BStrong-
I clicked on your link from downsyn.com where I am a regular. I just wanted to say Hi and that I am glad you posted.
As for your comments. They are very interesting.
I am from Philadelphia. We have our walk at a local University (Villanova) and it is very widely known to the public. Supported by the local NBC station.
So, I think it is all in the organizers and where the funds are going to.
Check out our website. www.tri21center.org
My daughter Megan, DS, is on every page.
Our money goes to "Friends of Trisomy21 Center" and to Children's Hospital of Philadelphia where they have a Down Syndrome Center.
Does Pittsburgh have their own website? Send me the link if you have it.
Nice talking to you.

Lori said...

Our walk in Phoenix is 6 years old, and it has always been held on the campus of Arizona State University, at the intermurual fields. Parking can be a problem, it just needs to be worked out ahead of time. It helps to have a big fence around the fields, for those who have the dashers. (Thankfully, I don't have one). We have held our event on every ASU Homecoming, and we participate in the parade. The kids really enjoy being in the parade, listening to the band, seeing the people, etc.. Regardng media, is is HARD to get coverage for the walk. I have not quite figured out why. Is it because there is a walk for everything, or is it because our kids are mentally retarded. Hard to say. Anyway, we do raise a bulk of our dollars each year from the buddy walk to promote our group, DSNetwork. However, and my 9 year old typical son can attest to this, we go to the walk because it is FUN. There is music, dancing, bouncies, animals, lots of games, drinks and food. I have recently moved to California, and I am retired from the Buddy Walk arena... for now.

BStrong said...

The more I hear about Buddy Walks the more it sounds like they are just one big party. I like parties. Maybe they should name it something else. 3200 people, that sounds like a great turn out. The coordinators did a good job. As for the media thing, I can't imagine it being because of the DS. I don't have an answer, yet.

Sarahlynn said...

As Lori said, the Greater St. Louis DSA Buddy Walk is a huge party and a huge deal. It's held in a public plaza a block from the stadium on game day, there is a LOUD DJ, inflatable bouncing houses, food, dancing etc. And the walk includes going *onto the field* at Busch Stadium just before the game starts. And given how fanatical St. Louis Cardinals fans are, this is A Very Big Deal.

Most of the DSA stuff makes me uncomfortable. I keep ties with the organization for a few reasons:
1) to be in the loop for special events, etc.
2) to insure that Ellie always has a community of others with DS if she desires it, and
3) to help support other new parents who are dealing with the diagnosis (I'm the official DSA support person for 4 familes).

But I'm not hugely active in the organization and I anticipate that the majority of my donations will go more toward medical research than toward awareness.

Debbie said...

I came across your blog through another one trying to connect with other families who have been blessed with a child with Ds.
I read your blog on the Buddy walks and I am glad that I am not the only one with this opinion.
Tomorrow we are attending our first buddy walk in Bay county Florida. I am excited only to be able to mingle with other parents and hopefull gain some knowledge. However, I am disgusted at the location. Just like you said in your blog. This one is in a park on the other side of town that is isolated. Why not have it Downtown. I think it is a good idea to have these, we need the people to understand that we are a part of the community and these children need to be accepted. There are many towns like mine that still want to hide them away and pretend they don't exisit. Our childrens voices need to be heard. Schools need to except them, we have to make noise we are different but equal at the same time. So I am all for the Walk, it just needs to be done differently. So I guess next year, time for me to get more involved. cheers~

Renita said...

Hello there.. I live in Circleville Ohio and I have a daughter , Isabel, with down's. When we attended our first and only Buddy Walk... I was laughing.. because I thought the same thoughts you had... wow.. can they put us in any other enclosed area so we won't escape? lol.. Tv? none. But we did have a Tv personality there. anyway.. thanks for sharing.. I am sure I will be back.. Renita

ADR said...

I know this post was a long time ago, but for my 2 cents:

The Seattle / Puget Sound Buddy Walk was held for the 11th or 12th time on October 5. It was the 6th one our family participated in. While we don't have a local Albert Pujols to really grab attention like St. Louis does, the event is VERY visible. It is held at Seattle Center, within view of the Space Needle and adjacent to all sorts of Seattle destinations and activities. (And we have had Mariner Moose or the Tacoma Rainiers mascot, and John Olerud, former first baseman for the Mariners, was the keynote speaker a couple of years ago).

Media coverage can be a challenge (spoken from someone who did the publicity for a couple of years), even though the major Seattle TV stations are all within blocks of the location. But one station hosts a PSA every year in advance, and another often runs at least a short amount of tape of the "walk" part, which at our event can't be missed because it goes right down a major Seattle street, with 7-900 people.

Do I agree that many walks could do better on the "promote DS awareness" part? Yes. On the other hand, all those press releases do that, at least a little bit, even if the PSAs aren't aired on as many stations as we'd like.

Do I agree that the best way to show our communities that people with Down syndrome are "more alike than different" is to be out at all kinds of events all the time? Absolutely.

But here are the things that I've found compelling and moving about attending the Buddy Walk (when it hasn't been 40 and raining):

1) Meeting and getting to know other parents. This is the biggest annual event of our local Down syndrome group, and if we hadn't attended the first one after our son James was born, we wouldn't have gotten connected for the other events. That makes it more of a "party" and "for us," but I for one need that sometimes, so I don't feel like I'm alone.

2) Hearing self-advocates speak, and seeing them marketing their art work gives me a picture of what my son may sometime do. This year we listened together to an incredibly articulate 20-something artist describe an impending trip to Italy, and I told my 5 year old, "Someday that will be you telling your story, James." It gives me hope.

3) At this event are people with Down syndrome and those who love them from all generations, from newborns to older adults. That in itself says to me, we are part of the same community, with the same kinds of issues. It also can show just how far we've come in just 30 years or so when you consider the amazing medical technologies and social services to assist parents and children with special needs from very early ages.

4) On DS Awareness again: this year we took a bold step and invited just about everyone we knew to actually come and walk with us. We'd never done that before, except kind of here and there. Occasionally someone would "stop by," and we were moved by their interest. But this year, because we asked, we had over a dozen people including our family who participated. For these friends, Down syndrome awareness is a bigger picture than just James. It's face painting and clowns. It's music and dancing. It's political speeches and celebrations of all kinds of accomplishments and potential. James' speech therapist attended, and joined our local DS group in order to stay connected to what's happening with people with DS in our area. Maybe this is starting to sound sappy, but it is always a very moving experience to me: the unavoidable and overwhelming sense of community that happens when everyone is in the same physical space together just having fun. I don't get that by going out to the mall, the baseball game, the park with my family, though those are important too.

This has gone long enough, and I don't even know if anyone will read it since the original post was a few years ago, but those are my thoughts on what the Buddy Walk here in Seattle means to me and to my family.


Andrew Ryder
Lynnwood, WA