To Raise Up An Advocate

In the fall, I attended an all-grantees meeting in Harrisburg, PA. I was there as a board member of Self Advocates United as 1, a disability self advocacy group which centers people with intellectual and/or developmental disabilities. Every one of our board members has a developmental and/or intellectual disability. I do other work with the group, but my purpose that weekend was in my role as a board member. I wasn’t well for about half the meeting, but towards the end I was approached by the woman who administers our grant. She asked me a question that I’m finally well enough to answer: how do we keep bringing in new youth? Did I have any unique ideas?

I told her I didn’t know if I had any unique ideas about bringing in youth with intellectual and developmental disabilities right now. There is a lot of organizing out there around youth issues, and I didn’t have anything especially new to add beyond referrals. But they aren’t really enough. Unfortunately many youth with these disabilities end up having either not been taught the skills involved at a young age, have overprotective and fearful parents/guardians hesitant to support their full participation, or parents that cling to the idea that their child or young adult isn’t able to do the level of self advocacy involved and that they must be their child’s voice forever. These are all really not the best outcomes when we want specifically youth voice from this population.

I did, however, tell her a little bit about what I thought could change this in the future. Here are some things that I think that we, as communities, systems, and as advocates, can do to make sure there are well supported youth advocates with intellectual and developmental disabilities in the future. Most of them are things that my own mother did for me, even when other people told her it was pointless. Some are things I’ve learned through observation of both self advocates and from parents. Either way, my experiences lead me to believe that these steps will  help.

We need to start telling parents when they first start out that it is possible for their child to become advocates. That even if they need extensive supports for the rest of their lives, advocacy is something that is important. It’s important in a personal context especially when you rely on others for your support. I’ve met few parents of kids and young adults with disabilities who haven’t worried what will happen when they are no longer the ones providing support. One of the ways to help mitigate the risks we have as a vulnerable population is to teach your child, starting young, how to advocate for themselves. Needing help understanding complex things, not speaking, or having extremely limited mobility don’t make it impossible to learn these things. Needing to learn it over and over again, or taking a very long time to learn them, doesn’t mean that they can’t and shouldn’t work on learning these skills. Self-advocacy is a survival skill. And a lot of the pieces that we learn in self advocacy can be used or built on in doing broader advocacy. 

We need to start teaching the foundations of these skills young. Let’s be honest- it takes a lot of people with disabilities like mine or like those of my fellow board members to learn things. Some of us need steps broken down a lot more, while others will just need taught the same steps over and over again, possibly for years. All of that is okay. It’s okay to take longer to learn things. What’s not okay is the emphasis too many people are taught on compliance based training- teaching skills that teach one to be more compliant and to eventually become an easier client to handle.

There are some other posts out there that can tell you about the effects of this kind of training and why it’s dangerous. I want to talk real quick instead about how this is contradictory to teaching advocacy, let alone self advocacy, skills. Compliance training, when it comes down to it, teaches you that the wants of other people are more important than what you feel you need- either to survive or to do your best. It also includes prioritizing the perceptions of others over your own lived reality- that other people are the authority on what you should do and what your life should look like so you should just sit down and shut up. You are taught to deprioritize your needs and your autonomy, starting with minor things and lead up to larger things like, say, if you are okay living in such and such facility instead of another setting, or working for peanuts. Additionally, your motivation to seek out alternatives is squashed, meaning that what ability to come up with your own solutions- which some of us might need support with to begin with- you have is made to stagnant. You end up being trained to be a better client, to be less “inconvenient” for those around you. You make yourself small.

ALL of these things are pretty much the opposite of self advocacy and advocacy skills. While we should be taught to consider others, it should be in making our own plans about our lives and how we can incorporate or work with the needs of those around us. It should be by trying to figure out how their experiences fit with ours rather than a substitution. And above all, learning to identify and come up with solutions to problems (and learning when we need help doing so) is something that can’t be taught effectively when compliance training is on the menu- and is one of the longer term skills that we need to eventually learn to be effective advocates. While some of us will always need extensive help doing these things, I fully believe that it is worth it.

We need to create situations of controlled risk- situations that are safe, but that allow both young people and our parents to experience risk and adjust to it. Risk is a part of being alive, of making our own choices. But there’s risk being taken even if we aren’t the ones making the decisions- it just somehow becomes more scary for parents when their children are the ones doing it. Slowly increasing the amount of risk we allow our kids according to what is safe is something all parents face. Acting as though those frightening parts of parenting- and yes, I understand that it is frightening!- don’t apply because your child will need supports the rest of their lives is not okay. By preventing (controlled) risk, you hamper the ability to learn how decision making works, as well as the realities of having consequences of our decisions. This doesn’t mean you do nothing to protect your child! It means that you need to be weighing from the beginning what the risks might be, and modeling the process of deciding what an acceptable risk is. It might start out with something very small, like the natural consequences of eating candy before dinner, and it might take a long time. But without there being any risk- even risk that you might be able to mitigate- we can’t really say that someone is making a real choice. Even if your child never gets beyond controlled and mitigated risk, it’s important to take that step and learn what both positive and negative consequences are and how to deal with them. You will end up feeling better about the decisions your child makes as an adult, and your child will have had the chance to become better at making those decisions.

We need to teach parents that part of their role is learning to switch from advocating for their children to either advocating with or supporting the advocacy of their children. When your child is young, you will indeed need to advocate for your child. Sometimes this part of being a parent lasts longer than others. But at some point you need to expect to switch to having your child become the advocate. Yes, there will absolutely be times that you will have to support your child, even extensively. Yes, there will be people who will not listen unless you, the parent that they perceive as “able,” repeat it. Yes, if your child has a very difficult to understand communication style you might have to act as or teach another person to act as an interpreter for the uninitiated. (My colleague Debbie and her daughter Amber- also a colleague- deal with this a lot when Amber does policy advocacy!) Yes, depending on your child there may be issues that have additional levels of complexity that they can’t quite get their heads around. But all of these challenges are why we need you to support our efforts, and to work with us.

Our opinions and perspectives are important when we talk about our lives. As your children become adults, we need you to understand that the work is not mainly about you- it’s about us, the young people with disabilities. You are our allies, not self advocates yourself, and we need you to respect that that is your role. It can be hard to hear that, or so I have been told by a lot of parents in a lot of different ways. But we want you on board. We want your support, your blessing, and, yes, your love. Though we will try to fight on without those things, we do want them from you- and as we go forward we, and the projects we tackle together, will flourish from it.

___

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14 thoughts on “To Raise Up An Advocate

  1. I really enjoyed this post Savannah. I did exactly as you describe when I pulled my kids out of school years ago after the whole restraint and seclusion abuse crap. Those three years broke me in some ways but strengthened me in others. I was able to find myself and help my kids become themselves. I truly believe in controlled risk taking, including the problem solving etc that comes afterwords (rather than punishment). People are very vocal about how irresponsible we are for teaching our eldest how to shoot a bb gun (we practice practice practice with broken-down steps all forms of gun safety in repetitive motor steps), he is learning how to cut grass, use power tools, ride his bike up the road without supervision and other things that scare the crap out of me but that I teach and encourage. He will be able to earn his permit in one year, and is already studying for the written test with help from school at my request. He knows he has to pass the written test by law and since driving and cars is extremely motivating to him, he is working so hard. Even though I can’t imagine him driving, it is so very important to HIM. Whether he will just have his permit or him driving requires me to buy one of those driver’s ed cars with the dual brakes and steering wheels, it will happen. He’ll make sure of it, and I’ll be right there with him cheering him on.

    A sidenote, the amount of pressure parents feel to be ‘good’ parents is ridiculous and a lot of us make decisions that always aren’t the best because of our own childhood traumas and not ever being allowed to advocate for ourselves. I come from a long line of abused abusers (physical and emotional) with quiet compliance and perfectionism (because often children are seen as a ‘reflection’ of the parents’ parenting) being the abusers’ ultimate goal. I broke the cycle, and every day is a constant struggle to keep the cycle broken but not let the PTSD etc eat me alive from within. I admit most self-advocate posts trigger me deeply for this reason, but yours did not. For that, I am extremely grateful.

    • I’m glad to hear that Ange. I struggle a lot around the trauma I experienced, so I understand what it means to find something non-triggering. In fact, the title of this post is a reclaiming of a sentence structure that is used as the title of a “parenting” guide that reads more like a guide to child abuse. I wanted to make something positive associated with that sentence structure instead.

      I’m also glad to know that you are including even the dangerous skills as ones your child is learning to do safely. While I actually had less objectively scary things in mind- I’ve met people who are in their 30’s and 40’s and older whose parents rarely allow them unsupervised time or whose parents have forbidden them to vote- it’s a great example of it being a scale-able concept. What “risk” is for one family might look entirely different from another. And the fact that the skills you are allowing him to learn are also useful ones is pretty important. Since he has the interest, you are teaching him how to do those things SAFELY- which is one of the many aspects of controlled risk. (And re:guns, I was taught not only how to shoot, but how to make bullets. I’ve target shot anything from shotguns to desert eagles- AFTER I was taught gun safety, and after I was trained on less powerful guns like BB guns. I’m very pro- people getting gun safety lessons where possible/applicable. It’s not for everyone, but if you are going to own/shoot? You better have been taught how to do it safely!)

      • I suppose my idea of risk has changed since my oldest is 14. There was a time when letting him walk 5 feet in front of me was a risk, and still, even now me taking a shower when no other adult is in the house is a serious risk (it wasn’t long ago that he busted open a window and climbed out on the roof requiring us to call 911). But each moment as a parent I make judgments and calculated risk assessments as to where Bub is in the moment, and am trying so hard to “train” other caretakers to ‘get it.’ He has a personal assistant that is amazing, and I’m so glad he gets it when I say things like “If he’s cussing with an age/developmentally-appropriate friend DO NOT step in or correct him!” We have been working on this skill a lot in his teen years, lol! He is allowed to cuss privately with his older friends, not the younger friends, and never around grandma because who wants to deal with the repercussions of that? ;)

        For my 10 year old, the risks are not as obvious, but even more frightening. He is my naturally compliant one and eats up praise. A rule follower and internalizer just like his momma. Teaching him when and how to advocate for himself is extremely difficult because it just isn’t his nature (never has been). I have more nightmares about him than my other child. But I have to be careful because if I push him too hard to step out, he feel emotional trauma, so the key is to let him observe (sometimes for years) until he has gained his own knowledge and comfort and then be right next to him to support him when he takes the chance to speak up (even if it’s against me). He was the one I worried about in therapy and school and we actually have a bazillion things in his IEP that he can’t be shamed for or corrected about because I know he would do whatever they wanted no matter what the detriment. Happy dancing is always allowed. :D

        WHat I’m running into though is his fear of doing something wrong and breaking rules is stronger than his desire to meet his own needs. For example, he will refuse to do something at school that is an accommodation (like using a sensory accommodation). I don’t push it because he tells me no he doesn’t want to use it, and that is his right. I try to find ways to make him feel comfortable so that he can choose it eventually, if needed. It’s confusing to me to listen to him advocate for himself, but against himself at the same time if that makes sense. But I was totally the same way (hate doing ANYTHING that calls attention to myself in a group setting, even if it’s just my own paranoia/perception), so I’m trying to figure out how to support him and make him feel comfortable to self-advocate. Any ideas would be much appreciated. He has never been abused that I am aware of, but his older brother (whom he idolizes) has a much more demanding and outward personality, which does effect him.

        • I refused to use a lot of my accommodations in HS for my own reasons. It’s hard. I hope that by encouraging him, and demonstrating that using accommodations isn’t something to be ashamed of/shy away from, he’ll get more okay with using his. :)

  2. Thank you so much for this, Savannah. I found myself reading along and realizing that our special education system in the United States profoundly undermines the framework our children need to be able to become self-advocates. It’s one of the things I hate about it, despite the many wonderful things it affords my child; I work very hard to give him autonomy in his life outside of school. It may make others look askance at me, but I know he needs to experience exercising his free will as much as possible in ways that are also safe.

  3. Reblogged this on Spectrum Perspectives and commented:
    Every person needs to be a self advocate. Every single one of us. As parents, we need to do our best to make sure our kids eventually don’t need us. Even our special needs kids need us to support them and teach them to learn the skills to need us as little as possible.

  4. I’m advocating on LinkedIn and directing professionals to posts/blogs by people who share their actual experiences. May I post this link when appropriate to comments/ discussions I participate in? Thanks!

  5. Savannah, I am the President of the Arc of the Midlands in Lexington, SC. We advocate for the needs of children and adults with I/DD. We are in the process of starting residential and employment services in our area. I found your article to be extremely on target. Some of the very issues you mention are some of the things we are going to be up against in the very near future. I myself have a son with I/DD and boy it is a challenge to let him be an individual. I feel fear, anxiety and stress, I want to keep him in a bubble…..but I don’t. I am working on MYSELF as a parent to get better at knowing and doing what he chooses for himself. You have enlightened me, and I thought I had a pretty good handle on this…I am humbled and have a renewed sense of commitment. Thank you for that!
    Pam Mele

  6. Very well put Savannah. One of my son’s had/has ADHD and as a result he was most challenging even before he was able to walk. He never finished kindergarten (got expelled), was kicked out of several day cares and I had to work around the clock to advocate for him when he was younger. Did I make mistakes? Most definitely because I’m not perfect, but looking at him today as a 25 year old independent young adult I am so proud of the man he has become. I so worried that he would be paralyzed by his issues but he has not only confronted them, he has also become his own best advocate. While I worried that he couldn’t develop the skills necessary to make it on his own I wasn’t aware of the influence I had on him so that he would one day feel comfortable taking situations/people to task when needed. And just like the movie Pay It Forward he has helped other people in advocating on their behalf.

  7. Pingback: 7 Reasons Why an Autism Advocacy Organization Would Oppose the Combating Autism Act

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