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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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
The discussions referred to are the Self-Advocate/Parent Dialogues at Thinking Person’s Guide to Autism, which you can find at http://thinkingautismguide.blogspot.com/search/label/dialogue. I’d recommend people read through the entire series, as the second week brought more synergy and less dissonance than the first. It has certainly been informative to read how differently readers and participants reacted — some defensively negative, others thankful and positive; others still processing, pensively. And much good has already come out of the dialogues, such as actions already being taken in response to self-advocate Zoe’s call for a PFLAG-like self-adovocate/parents/allies organization.
I am certainly grateful to everyone who participated in the Dialouges, even if only as a readers. But they weren’t meant to be a solution, they were meant to be a start. They were *absolutely* complicated and challenging — that is what the early stages of social justice and civil rights movements look like.
At the root of the Dialogues was one of the most important questions any person can ask themselves — if someone asks me to listen to them and take their identity and cause seriously, do I pay attention? Even if what they’re saying makes me reassess my own identity and cause, down to the core?
Being a parent of a child with special needs can be a really damn hard, isolating, marathon, sometimes heartbreaking role — much of those difficulties externally imposed by the educational, medical, social, and legal systems that let us and our children down. It is understandable to be taken aback when someone tells us that we don’t have the right to speak for our children, if we’ve spent so much time as their only ally, against all odds and bureaucracy and prejudice.
What parents need to consider is that self-advocates *are* our possible future children. That while our child may not share the same disability — may not even ever be able to self-advocate — that is a separate matter from that self-advocate’s right to not only have a say but be considered an authority when it comes to disability rights.
So, yes, we should work together, and I appreciate Julia’s call for listening, and especially her call for apologizing when we make mistakes — I’m a mistake-making flag-waver, myself — But getting to the place where we can do that is going to be hard work, and we’ve only just started. We need to build cross-communities respect, first.
Shannon, thank you so much for your comment. If it’s okay I’d like to put the link in the post with a note. I didn’t because I didn’t comment and didn’t have time before this post went live today. Let me know.
Of course. Thanks, Julia.
Julia, I’m glad you wrote this, as it pretty well encapsulates the feelings of a great many people who have reached out to me in the aftermath of the original dialogue. I think one of the reasons the tone changed between the first and second weeks may be that many parents who would have otherwise participated felt shut down, disrespected, dismissed, and while that may be only fair considering how self-advocates have no doubt felt over the years, it was still contrary to an effective dialogue. Did parents leave the discussion too soon? Quite possibly. But for most of us, there were more immediate concerns that needed to be addressed, and more familiar adversaries to tangle with.
That self-advocates should have felt like adversaries at all is sad, but at this time, I don’t see a pathway to more productive conversation or more effective advocacy. Parents are accustomed to feeling alone in our fight, and I’m sure self-advocates are as well. None of us, parents or self-advocates, are going to go away or quiet down any time soon. Perhaps that alone is hope enough for a future better advocacy from a more united community. I have my doubts, but I’ll be the first to admit that I’ve been wrong before.
FYI, comments are moderated if you’ve never commented here before.
One other thing I forgot to say is that a lot of parents felt like rather than engage in a real dialogue, a number of self-advocates took the opportunity to demonize parent-advocates and make them/us the target of their long-standing frustrations. Those frustrations may have been legitimate, but trying to recreate parent-advocates as cartoon manifestations of the worst of society’s slights was mostly unfair.
We get enough of that sort of thing from the world around us, from ill-informed teachers and arrogant doctors and random strangers in public places. It’s not enough that we spend our lives fighting for our children’s right to exist on their own terms and in a world that gives them a fair break. We also have to fight to preserve our own credibility with a variety of parties, professional and otherwise, who aren’t invested in helping our kids but have plenty of their own interests for which to advocate.
Frankly, we don’t have time for any more of that than we can possibly avoid.
I felt conflicted about the whole discussion, and still do. I’m representative of the “disability trifecta” so to speak: I’m a self-advocate, a parent advocate, and a spouse advocate. I know how absolutely frustrating it is to feel like my knowledge/experience as a self-advocate is completely shoved aside when talking with parent advocates or for that matter, how frustrating it is to still have my family tell me what I should be doing or not doing, even though I’m an adult. I’ll admit there are times when I’m frustrated with parents at the table who I feel like just don’t get “it” and can’t put aside their own agenda for the good of the community they’re trying to serve. So, I understood what some of the self-advocates were saying over in the Thinking Person’s Guide posts.
But on the other hand, I know how frustrating it feels to be tossed-aside because I’m “just” a parent. No one wants my sons to be successful as much as my husband and I do. I want a seat at the table with the self-advocates because there is no one else to help my sons, and I want them to have a seat at the table when they’re older. I want to learn from the self-advocates and be an ally. I feel like I have skills that can help.
And being a spousal advocate? I don’t even know what that entails yet because in the disability communities my husband falls into, all the attention is focused on the children, such that my husband doesn’t even feel he has a place at the table, let alone me as an ally.
But here’s the thing. It’s too easy to split into silos, like you said. We could split one silo ten different ways, and each of those ten times over. Every single person has their own agenda, and that’s ok. I mean, even my baby and I, who share a diagnosis, may have different agendas as he gets older. Both parents and self-advocates need to keep having these conversations so that we can come together. I hope that with time the conversations will be more civil…I quit reading after week one because I felt like there was too much venom in some of the comments. It was too depressing to read because everyone was angry and I wasn’t sure where I fit in.
Great post, Julia, and thanks for keeping the conversation going.
Thank you Julia for posting this. As a neophyte parent-advocate, I found the discussion on Thinking Person’s Guide to Autism engrossing. I stayed up for hours reading each and every comment. Since then I’ve shared my awakening with friends, family (and even random acquaintances) inside and outside of the Special Needs community. So Rob I disagree with you that there isn’t a pathway to a more productive conversation and I was sad when you removed the conversation link from your blog (where is how I came across it to begin with).
Maya Z, you are so right that every single person has their own agenda. I think that everyone in this conversation of ideas can benefit from recognizing that truth. Having ones own agenda isn’t a bad thing, it’s just true.
I think as a Communication major trained in critical theory I just am completely accepting of the unreconcilable. That doesn’t mean we cannot move forward with declaring our needs to each other and to the larger culture.
Amanda, I know this is a phrase that has been horribly overused (and frankly misused much of the time) in this particular discussion, but I’m afraid we’re going to have to respectfully agree to disagree.
Apologies for the delay in replying — beyond busy these past ten days though I’ve been thinking about this the whole time, because it’s so damn important.
I am all for civil disagreement. I crave it. Anything else is an aversive and makes me wince.
But I also recognize that it is unreasonable to expect people who are oppressed to be civil when discussing that oppression with the people who are oppressing them. We parents *who do not ourselves have/share our kids’ disabilities* know too well how pissed we get when folks treat us and our kids badly, especially when they do so from behind a shield of good intentions. Do we really want to behave that same way towards people who know what it’s like to be our kids, and who (in the case of every last adult with autism who wrote for the Dialogues) work so hard to make life better for our kids/people with disabilities?
If we were parenting children of a different sexual orientation or race, I’m guessing very few of us would dismiss the feelings or rights of representatives from our children’s community, or get publicly defensive if we were called out for writing something offensive to them if we did so out of ignorance rather than malice. We would listen and learn rather than protest because those communities have established, recognized advocacy movements, and have changed the way most of us think — to the point where folks who publicly oppose racial equality or LGBT rights look like total assholes.
The rights matters discussed in the Dialogues are no different, but the discussion is younger, and while the Disability Rights movement is long-standing, the Autistic Self-Advocacy movement is just starting. Do we really want to be the opposing assholes cited in the history books? If we aren’t ready for, don’t have the energy to, aren’t able to help, or aren’t able to tolerate the unpleasantness that comes with working towards and effecting real social change, can’t we just listen without making it about us — or get out of the way?
This is hard for me to write. I *like* everyone who wrote for the Dialogues. I always want everyone to get along. And, when I find out people are upset my heart goes out to them — as it did to Rob Rummel-Hudson when there were real-life repercussions from participating in the Dialogues, and as it did to so many of the participating self-advocates who felt that Robert and other parents continued to justify not listening to and dismissing them.
I am not saying all self-advocates are paragons of righteousness and perfection, or are incapable of making mistakes, or that we non-disabled parents need to listen to every last word they say and can never argue, never have the right to stand up for ourselves. That would be absurd, as it would be to expect self-advocates to view us non-disabled parents the same way. But when the discussions are about what self-advocates want, and what they need, and what they deserve? If we want to be the kind of parents and allies our kids want, need, and deserve, then we need to listen.
Again, I recommend people read the second week of the Dialogues, which would be the top five posts at the following URL, i.e., Day Six through Day Ten: http://thinkingautismguide.blogspot.com/search/label/dialogue.
I also recommend reading Jean Winegardner’s excellent essay on the Dialogues, Who Should Lead the Autism Rights Movement:
http://communities.washingtontimes.com/neighborhood/autism-unexpected/2011/sep/30/who-should-lead-autism-rights-movement/
/pontificating
This is a comment for this post: https://supportforspecialneeds.com/2011/10/12/the-silo-effect-with-parents-and-self-advocates/
People make mistakes, there is no problem in that, I agree that we must forgive, if we learn with them, avoid them and apologize when we hurt others.
Anyone can make mistakes. It’s not easy to be aware you did something wrong, especially when the other person comes from a different reality, that happens a lot with oppressed groups, I have done this several times with groups I am not a part of (and with the ones I am a part), but I am learning, the most important thing is to listen to who know best, the people who are actually part of the group, even when I don’t understand, even when I feel offended, because that is the most common reaction we all get, we get defensive, we feel offended when someone say we did something wrong.
As I know very well, it’s a terrible feeling when you notice you have a lot of internalized prejudice, that what we do and say hurt others, all of us do this, what we do with it is the important thing.
Allies are not the people who are never called on their mistakes, allies are the people who are more called on their mistakes because they are the ones that really care, the ones that want to change and do better, at least this is what is supposed to be, allies are supposed to be the people we can trust. Read this more complete post about what I’m talking: http://eateroftrees.wordpress.com/2011/10/21/allies-are-terrible-forever/
So, yes, we need you, but only if you want to listen to us, I saw parents who listen, many times parents came without knowing anything and saying wrong things, but they learned because they listened, those parents are great people for this, I don’t focus on the bad comments wrote, I focus on how great people can be when they want to grow, when they notice that someone is trying to say something important and they really think about what was said, I want to be this kind of person for others, so not forgiving is not the problem.
I don’t understand the “self-advocates demonizing parents” comments that I keep reading in several places, it’s unfair, it’s a hurtful comment, it judges a whole group of people, in a way, it ‘demonizes’ self-advocates if you think about it. It treats people with disabilities as the other, the bad group, the irrational group. It truly worries me that people can say this and not even notice what they are saying, it worries me more when we tell that something is wrong, that this is a bad thing to say about us and we are ignored. You can’t say things like ‘black people demonize white people’ on a debate about racism can you? If you can, you are a racist. Why is it alright to say this about us? I felt shut down and disrespected several times too, it wasn’t just parents who felt like that.
A nice post here: http://timetolisten.blogspot.com/2011/10/for-billionth-time-i-dont-hate-parents.html
I notice a double standard, we must apologize for several things, but we don’t get consideration from hurtful comments, we explain why something is wrong to say about us, but what we feel is not important, then we must apologize for being angry about anything, but when we explain our feelings about something, we are ignored. Reading messages of let’s all get along, without listening to us, doesn’t help, we need you but what does it matter if we are ignored? (This is not about this post, it’s a general comment about the situation, like most things it’s not personal except I say it is.)
If I should learn were you are coming from, your perspective, please, learn were I am coming from and my perspective, it will be useless if I keep doing what I can to understand you if you don’t try to understand what I’m saying.
A last comment, many self-advocates who are on the internet, like me, are not using the computer on their free time because we have such good lives without any struggle, it’s not like we just don’t have any more important thing to do and have a lot of free time, actually for most people who are excluded from things in life, this is one of the few things we can do, as a distraction, as advocacy, as social life, so every time I see comments of, ‘people who are really struggling don’t have time for this’, ‘I must do something really useful and not this’, ‘I have a real hard life and this is why I am leaving the conversation’, all of this comments are really hurtful, now a really personal information, it may sound pathetic for you, but one of the reason I’m alive today is because I can talk here, I also have social anxiety on the internet, so I don’t really connect to people here, but the little I connect, and even the silly things that distract me, that helps me, before it helped me even more, this made me survive, you are just erasing that completely, you are erasing people who are fighting to be alive, you are putting people down, you are erasing me.
I have yet to read anyone apologizing for saying that.
Besides it’s one of those silly arguments, like poor people can’t have anything or they are not really poor, really disabled people don’t waste time on the internet,
Also, executive dysfunction and procrastination, remember that.
-This comment was written fast during a migraine, it could be better written and better revised but I don’t have enough energy for that. I posted this on my blog too.
I think Shannon makes an essential point in highlighting the difference between ignorance and malice. “Ignorant” is not an insult. Ignorance is simply “a state of being uninformed.” I don’t believe any self-advocate accused a parent of being malicious- desiring to inflict injury, suffering or harm- in the Dialogs. What they were calling out was ignorance.
I am a parent. I want to be very clear in noting that I have, am and will be ignorant in more areas than I’d prefer to acknowledge. That’s life. I’m not perfect. A lot of life is screw-up, learn, repeat. But the learning part is essential. When someone is really pissed off at me- someone I respect- it hurts. Deeply. And I can be completely clueless about what I’ve done to piss them off.
But it’s what I, or anyone, does next that’s crucial. Do we say, “screw it, these people are bad?” Or do we try to figure out what’s making them so angry, especially if we have something in common with them. Especially if they can actually be role models to our own children.
Overcoming ignorance is not easy. It’s hard work, and parents of any kind already have an extremely tough job in this child and family denying society. But we need to listen. We need to overcome our own defensiveness and ask “why is this person so angry at me.” The answer is well worth the pain.
Thank you so much for this Julia. Such an excellent post and so very timely.