#EndTheTelethon 2020

When I saw that the telethon for the Muscular Dystrophy Association was being revamped for the 2020’s, I was torn.

Image on either side of a little boy and the same as a man. Writing
“.Torn.” below ” “…Jordan Sibayan…”

Just seeing that shows me that in many years of knowing the organization, they have taken a step back. I thought those years ago when they stopped the telethon years after the death of Jerry Lewis, that MDA would shift focus from the pity-party approach, and continue on a path that lead to more leadership within the NMD community to be real with us.

They had been doing well in getting people to advocate for themselves, and re-brand. But this…shows that this organization internally cannot change.

Growing up, I was part of the last generations of poster children. Late 90’s, early 2000’s. I remember going to the television stations to promote my story, being brought out for the telethon. At the time I thought nothing of it. It was fun! All the cameras and lights.

But the light hurts your eyes after a while. After the lights went off, and years passed, and growing out of the “cute poster child” phase where I could no longer be marketed…it does something to you.

Small boy, white. Glasses, wearing a green shirt with one blue and one red sleeve. Holding a microphone

I was never the most attentive kid. I didn’t have that great attention span and sometimes I became distracted. It was a lot of pressure to continue to be accountable and aware of something like that. Maybe it wasn’t the life for me.

Appearances on local news about MDA goings on, lock-ups, fill the boot, telethon promotion and being on, it gets to you after a while. Being a poster child and realizing when you grow up you’re less desirable…

That screws up your psyche…

You then grow up, you have memories of it. Memorex and Kodak cassette tapes of your appearances. Back when you were “cute”.

They used me. They used us. Then threw us away.

I’m not a throw away though. I actually am proud to come from a family line where I share my disability with my father, my aunt, and their father before that. Not much is known about further back. It could have come from the Philippines, Eastern Europe, anywhere.

I am disabled and proud. I wish I could say I am proud of being a poster child. I am not.

Small child, white, with glasses. Logo for a local chain store in the background. Selling Shamrocks is Easy…

Years later, because of my history with MDA, I got into an internship with my local MDA office in Colorado. I was taken in, like an old friend. I thought it would lead to more. The telethon had winded down and I saw some sort of change. Not only did they shift focus away from poster children, they began to go in go real issues. I believe it was then they started really kicking their MDA Advocacy into gear.

My internship via the staffing agency was three months. Working with my vocational rehab coordinator at the time, we thought it would be a fit. I had done good work for them, flyers, event prep. Even helped get a lot of food donations for their end of year holiday party they throw.

Before the party took place, I was notified I would not be continuing with the orgniazation. The phrase “it’s not what you know, it’s who you know.”? I’d known some of these people for almost 15 years of my life up to that point. Didn’t make any difference.

Thought it may be nice to have a client on staff to give that perspective? Naw, why would they do that. I put on a show for you years back, they made their money, you threw me a bone for a few weeks, and threw me away.

This former poster child worked hard for an organization that he felt was changing with the times. At least as a poster child, I got some recognition…

After realizing that I essentially wasted a good few months, working the first “real job” I was able to get, I’ve been cut loose. Because you know, for people with disabilities opportunities are just lined up.

At the end of year party, after I’d helped secure food donations as well as doing other tasks assigned to me during that time, I noticed something.  On every table, there was a tri-fold print out thanking the caterers, venue staff, those who donated food, and all the local office staff. Everyone was named in the thank you.

Everyone…but me.

I worked there for a few months. Right around the time the telethon would have been. It felt like I was really making a difference and I thought people at the office would find it refreshing to have someone with such a history as part of the team.

Guess I was just their poster boy there too?

I have had many opportunities that most kids would dream of having. Looking back I see how demeaning they were. Also to be honest, based on recent understandings and growing up being part of the disability community, how inherently ablest they were. While I was on the telethon on the late 90’s, there were people who I now know as my peers and mentors protesting to shut them down.

A lot of mental scaring has come from that and not many people outside of other former poster children could understand. Yes it was fun…to an extent…also a lot of pressure. This is back before I knew of “Spoons”. I don’t think I had enough for that.

This was before I knew what “Abilism” was. Before I realized that many of the opportunities afforded to me were denied to others, due to race, sex, and other discriminatory practices. Based on the layout of MDA Camp, I’d have thought that no Black, Brown, or Indigenous person had any NMD. Also the myth that the gender breakdown was more geared towards men then women, which is why there was always 5 of the 6 cabins being “Boys” and only one “Girl” cabin.

The rebranding of the Telethon is a step backwards. I wish MDA would have continued to be a REAL support system to families and individuals. Guided them to more supportive environments, ensured that everyone who wanted to attend camps could.

I wish many things. Being surrounded by and working with many wonderful advocates from disability rights and justice organizations and those who work independently, I have gained pride in my disability that much more. It is a powerful thing.

Why MDA hasn’t stood up to affirm our rights to live in freedom, or to make a push to ensure people know about access to DME, Attendant Care, and their rights as they get older.

Better outreach for medical care? Any of that. It feels like after you are passed the “cute poster child” phase, all help and support goes out the window.

Why not an MDA event surrounding issues going on with adults, or teens? How people with NMD can get employment? Become hooked into other advocacy networks? Show how the community intersects with other groups?

Anyone in the community advocate for themselves and others? Any people of note working with Black Lives Matter, or to free people from the detention centers?

In addition, how many of the higher ups at MDA have a Neuro-Muscular Disability themselves? So many questions. 

This weekend is hard for a lot of us. I know it is showing in my writing, because in the age of a pandemic I cannot believe that something like this is happening.

I would have loved to see more support from the Muscular Dystrophy Association when it came to support for COVID-19. Helping families prepare, helping adults know their rights and reaching out to clients more. I know out-reach calls are a thing..or they were when I was working. No calls to check-in?

Instead, lets throw money and resources into bringing back an outdated event that will continue the discriminatory practices of using children with disabilities as objects of pity.

I am telling you, being a former poster child can mess you up. I cannot even describe some of the feelings. The opportunities I had are irreplaceable, yet some of them I wish I could forget. This whole thing has me torn.

I am NOT torn on this though.

End the Telethon.

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