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The Silo Effect with Parents and Self Advocates

I don’t remember where I heard about The Silo Effect but it was  years ago. I’ve often referred to it in my volunteer work because it’s involved a lot of different personalities and agendas even though a lot of times many of our goals were shared.

The Silo Effect is representative of a culture of being together, even looking alike or similar, but not really working together. Much like farm silos, that hold grain, stand tall and are close in proximity and are contained units, rarely is their communication from silo to silo, instead it’s just up and down – in their own silo. They represent what isn’t happening, more than what is happening for an organization or community.

Such is the case in the disability community. It really isn’t a surprise I suppose, but it is sad. Over the years I’ve often thought about The Silo Effect in regards to the world I’m in with my kids who have differences.

There was a time when I was solely focused on therapy for delays. Silo! Then there was a time when I was solely focused on awareness for ARPKD. Silo! My kids had a kidney disease that took primary focus in our house for a time. Silo! Then I really took an interest in educational delays. Silo!

It wasn’t until I woke up one day and realized that our situation crossed over a bunch of areas – medical, educational, mental, emotional, developmental – that I knew I needed to get out of my silo. It became impossible for me to live in a Silo World if I wanted to know more and parent the kids in the best way possible. As an advocate with an adult relative who has developmental disabilities, I needed a broader landscape of knowledge. I had to step out of my silo. I needed information from more people than one group allowed and so I branched out. In some ways it is what spurred the creation of Support for Special Needs.

The disability community; parents of kids with special needs and adults with disabilities, families and friends of people with disabilities, professionals that serve the community in some way be it teaching, support services, education and advocacy looks a lot like a farm with a lot of silos. It’s a Silo World.

Recently there were some discussions (here, on Thinking Person’s Guide to Autism)* between parent advocates and self advocates in hopes that they might create understanding, a bridge; something that might start the process of working together better as one larger community. In my opinion, that didn’t happen, unfortunately.

Is there one reason? Probably there are several. I think maybe one reason may be because for a lot of years many years ago, no one in the disability community had a voice. There used to be a lot less people who worked in the field of any kind of special need or disability as well, so certainly they didn’t have a voice. Turns out that as people and issues got noticed and people were granted some rights here and there, they really had to fight for their own issues because there wasn’t (and still isn’t but we’re talking about back then) enough services and support to go around.

People, they kept clamoring for attention! Pick me! Pick us! We need more! Please do more!

I know this because I’ve done it. I am sure that I will always do it for issues that are important to our family; organ donation, kidney disease (ARPKD), learning differences/special education. The thing is, even though I do all of those things I can still advocate with a larger community for bigger issues that impact all of us.

I do not have a disability and yes, I consider myself part of the “us” in All of Us. Why? Because I too, have a voice; something to lose and something to gain. What I say is important too. It’s not any more important than my kids or than self advocates. Why? Because I know you know things I do not; important things about your position. We can’t do the big stuff without each other. Civil rights for disabilities? We need more of us together, not less. More choices and more support services? We need to work together because that impacts all of us in different ways. Being valued as a member of society and not invisible? We absolutely need more education around this issue. That is so clear to me.

You know what I want to say to self advocates, with not one ounce of disrespect or smugness?  You need us. We can learn what is important to you and we can help you fight for it. You need more of us, not less. You cannot do it without us.

You know what else? We can’t do it without you either. I need to know you and your desires; I need to know what makes you feel validated, listened to. I need to  know this because one day in the future I’ll have two kids who’ll grow up and be advocates for themselves and I don’t want to screw up helping them learn to do that, if at all possible. Knowing you and learning from you helps me do that in a better way.

We cannot live in a Silo World and expect there to be great change. I don’t care what disability we’re talking about, either. There has got to be a way to have disagreement and still work together with respect and kindness. There is a way for us to grasp onto what should bind us together; that greater goal, whatever “it” shall be. Maybe the greater goal in the beginning is just for us to identify as one community. Then and only then can we take on issues like civil disability rights including special education/education for differences, or support services for adults with disabilities.

We all want everyone to be valued. To feel like they are valued as a member of society. Respected, heard. We all want that, don’t we? I think that is easy to understand, I really do. I know it seems simplistic and naive. I know it does.

But if we all know we want people to be valued and we want to be valued, I don’t understand why we can’t hear each other; and listen.  Most of us parents of kids with special needs and adults with disabilities do not set out to offend. We’re just looking at life from our perspective; one that is colored with a history of issues (oh goodness my issues) and likewise, I know others come to a discussion with their own history of issues.

You know what? If we’re in the trenches together, I’m sure to screw it up sometimes. I’m sure to say something you don’t like. There will be missteps. There will be times when you want to throw in the towel on me and say I can never see your side because my Silo World is not part of yours. But don’t. Don’t give up on me; on those of us that really want to bridge the gap between us. Please, don’t. I won’t give up on you when I want to walk away because I think you can never see my side of things because your Silo World is not a part of mine. I promise I won’t give up if we’re really trying to work together to create a larger community. I promise.

Let’s apologize to each other when we screw it up. Let’s mean it.

Let’s realize there are different views that are valuable, and know that difference doesn’t meant we can’t still have shared goals.

Let’s try to see each other. Really see each other from the most different perspectives possible.

Let’s give each other some leeway and room to screw up – because it will happen, and maybe happen often –  and let’s be respectful when that happens.

Let’s laugh more. Even in the serious world we all live in with our Silo World selves, we can laugh. Let’s create a safe place where we can laugh at our imperfect selves, or at least where I can laugh at my imperfect self.

Let’s take a deep breath when we need it and all respect the need for ourselves and others to step out and maybe back into a conversation when time is needed to consider what is being said. Let’s not be reactionary. Let’s take our time.

Let’s not fight against each other so much and thereby giving people outside our various silos reason to dismiss all of us.

So, let’s listen to each other. Really listen. Let’s not disregard, not belittle, and let’s agree not dismiss each other.

I believe we can still work in our Silo Worlds for our individual advocacy goals and I believe we can work together for share goals where you need us and we need you.

Do I know where we really need to start? Tactically? No. I have ideas though and I bet you do, too. I want to hear them, I really do.

There must be a way for us to figure this out. Right?

I’m listening.


*Edited to add this link to the discussions with Shannon’s permission. Also, as a matter of record, I didn’t comment on any of the dialogue days. Ultimately, I didn’t feel comfortable for a variety of reasons.

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