The Advocacy Wars: Different, Not Less

advocacy, parenting, self-advocates, disability, special needs

Apparently, I’m selfish, coddled, and incapable of understanding. Oh, and I’m also wasting my education and undermining the fight to break the glass ceiling. Because parents of children with disabilities are insufferable martyrs, and stay-at-home moms are selfish slackers.

What a horrible mother I must be, and I never knew it until today.

Several years ago, the term “Mommy Wars” was coined to describe the debate between working moms and stay-at-home moms. Professors proclaimed it a “tragedy” for educated women to stay home with their children – bad for them and the kids. Educated women who chose to stay home vehemently disagreed. I found the controversy a colossal waste of time. Why, when women have made historic strides in terms of equality, would they now want to tear each other down?

Five years later, here I am again – same song, different verse – this time in the realm of disability advocacy.

Several weeks ago, many bloggers voiced opinions about the disability slurs in “The Change-Up.” Robert Rummel-Hudson wrote in story form of a hypothetical parent who went to see the movie. His piece was completely different from the one I wrote, but compelling just the same. A few days later, a college student by the name of Zoe who has an autism spectrum disorder wrote a rebuttal piece (I urge you to read both posts for the full backstory). One section in particular was hard to swallow. From Zoe:

Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like.

When I read this paragraph, and the associated comments by other self-advocates who high-fived Zoe’s assertions, I wept. As a parent, each day is devoted to my childrens’ inclusion as equals in society. My message first, last, and always is “different, not less”. Yet, this young woman asserts that I am both different and less because I’m not disabled.

Coddled?

No. We fight for everything our children receive, and sacrifice our own well-being and interests in the process. The closest thing to coddling that I’ve received is pity, and I assure you, I don’t want anyone’s pity.

Spoken of as martyrs?

Yes, people do place us on a pedestal. I hate it. I prefer to be seen as a regular mom with regular friends and regular interests and an ordinary life. And you know what else? When people put you on a pedestal, they raise their expectations of you exponentially.

Excused for bad actions?

I would never excuse a parent for abusing their child – with or without a disability – and I would expect the same judgment if I were to abuse my own children. Those who do should ask themselves why they never reached out to help the parent they perceive as “desperate.” I can assure you that the people who excuse atrocious behavior aren’t loving, caring parents of children with special needs.

Can’t understand isolation?

We are nothing if not isolated. We live with our children on the fringes, fighting and clawing our way into typical society. We have few close friends because people (including some family members) distanced themselves from us after our children were born. We have little time to spend with the friends that we do have. We are labeled “overly sensitive” when we object to disability slurs, and judged for our lack of involvement when we aren’t joiners.

The perspective of the parent is different from that of the child, to be sure. I will never know what it’s like to have cerebral palsy or Down syndrome, and I empathize with Zoe’s frustration that our society listens more to non-disabled parents than to self-advocates. However, if society isn’t hearing you it isn’t because the parents are talking too loudly – it’s because the rest of society isn’t listening, and that’s something we as parents are trying to change.

We may be imperfect allies, but we are not the enemy.

Sarah Kate will likely always be able to self-advocate effectively. I’m not sure what Nathan will be capable of doing, but my hope is that he’ll be independent and an effective self-advocate, as well. When the day comes that my children no longer need me to personally advocate for them (Thanks be to God!), there are still thousands of others who have no voice – for them, self-advocacy isn’t an option. Some people won’t be able to identify with my children because of their disability. Others won’t be able to identify with me because of my lack of disability. We all have something to add to the conversation, and we are all working toward the same goals – that of acceptance and inclusion.

I’m different, not less.

This week, The Thinking Person’s Guide to Autism is sponsoring a dialogue between parents and self-advocates, including Robert and Zoe. I encourage you to check it out and let me know your thoughts.

Comments

  1. says

    Oh jeez Louise. My opinion is quite simply that children should be raised by their parents, end of story. I think it’s WONDERFUL to see a parent advocating for her children, disability or no!
    I think I’ve told you before, but I work with special needs children. At the moment I’m fortunate enough to work almost solely with families who are very active in their children’s lives… but that hasn’t always been the case. I’ve worked with some flat-out awful mothers who don’t really care one way or another what their children learn and how they’re treated.
    One mom told me after I taught her son how to use a microwave, “That’s great but don’t expect him to learn everything. He’s still retarded.” That same mom, when I told her a neighbor kid had run by the window and shouted that her son was a freak, said “well… people will have their opinions, you know?” and I’m sorry to say she isn’t even the worst of them.
    I’ve also had moms who “advocate” so much for their children that their children can’t even speak. They don’t answer questions directed at them because they’re so used to mom jumping in and answering for them, they don’t say or do anything when their wants aren’t happening because they’re so used to Mom taking care of it. I am 100% against that kind of coddling, that kind of destroying a child, but I’ve also seen it happen to “typical” kids. I think there is of course a line between being controlling and helpful, or between being apathetic and allowing self-sufficiency, but I think that line is pretty much made of common sense and I’m quite surprised how often its blurred any ways!

  2. says

    I’ve read all the posts and all the comments. I have a HUGE amount of respect for both Rob and Zoe. I do think a lot of Zoe’s original post was inflammatory, but at the same time her most recent post over at the Thinking Persons Guide to Autism resonated quite a bit with me. I think that the problem comes when neurotypical parents of kids with disabilities become NT parents of adults with disabilities, and therein lies where the disconnect occurs. It’s expected that we advocate for our children, regardless of ability, when they are small, when they can’t communicate, and when they lack the ability to fully comprehend the decision that needs to be made. We do this daily for all of our children, what to eat, where to go to school, discipline styles, etc…

    It’s when our children are able to use their voice, their words, their communication skills, to self-advocate that our roles as parents becomes much more of a facilitator than decision maker. I’m not talking about pb&j or chicken nuggets for dinner, but things like independent living or where to go to college, etc… Big things. Control of life things. And the problem with the self-advocate vs. NT parent argument is that both sides make radical assumptions about the other that are no different than making sweeping generalizations about people with disabilities. Because the reality is some children may grow up and still not be capable of self advocacy. To believe otherwise is naive. The radical self advocacy camp ignores that some people are simply unable to advocate for themselves on a large scale and instead throw barbs at the parents in these situations. And there are some parents who believe that their child will never be able to self advocate and therefore completely close themselves and their child off to even the possibility, creating a self-fulfilling prophecy.

    I’m certain there is common ground from which to advocate together, but until both “sides” agree there is middle ground the arguments will continue to be slung back and forth.

    I only hope that the conversation at The Thinking Person’s Guide continues to be as respectful as it has.

  3. says

    Hi Andi,

    I still need to read the links to get caught up on the backstory. Love your post and your argument. I am the co-founder of Stop Disability Slurs http://www.facebook.com/stopdisablityslurs (with Gretchen!) and it saddens me that Zoe and possibly others believe that we would defend those who abuse ore neglect their children, differently abled or not. Anyway, I still think it is important for us to unite and advocate for our children until they are able to advocate for themselves and to advocate of those who can do so. Great post!

  4. says

    It seems somewhat unfair that you don’t mention here that Zoe apologized over a month ago for using the word “coddled” and acknowledged it was wrong for her to use it. That’s not to say that it isn’t legitimate to criticize her for using it in the first place– it is, and I have. But don’t readers who are basing their opinion of here just on your criticism of her have the right to know that she already said she was sorry?

    • Andi says

      Of course, readers are encouraged to consider all points of view, which is why I provided links to both pieces and urged my readers to go and read them (and I did so in the first sentence that mentioned Zoe). I also included a link to the TPGA’s dialogue series at the end of the post.

      My intent with this piece was not to criticize Zoe personally, but to expose, and encourage my readers to consider, the divide that exists between parent advocates and self-advocates. I didn’t highlight the apology because I didn’t feel that the issues at stake had anything to do with offense.

      There’s no way, in a brief blog post, for me to cover all aspects of the discussion, and I hoped when publishing it that my readers would thoughtfully research the backstory on their own, and draw their own conclusions.

  5. says

    I’m glad you wouldn’t excuse parents for abusing their disabled kids.

    That doesn’t mean society doesn’t. I wrote the Day 7 post, there are a number of things that are way too intense for me to even think about writing about, and my parents got a free pass. No one cared. People now STILL tell me it was ok for my parents to abuse me because “raising an autistic kid is Haaaaaaaaaaaaaard”. These are parents of autistic kids telling me this. And then there’s the hero worship of people who KILL their autistic kids.

    So yeah. Please don’t pretend that it doesn’t happen because you wouldn’t do it. Some people suck more than others.

    • Andi says

      Thank you for commenting. I will say right out of the gate that I missed Day 7 because I stopped reading the dialogues after Day 5 – it was too heartbreaking for me to continue. However, I will respectfully respond to your comment.

      I’ve never pretended that it doesn’t happen – just like I won’t pretend that children with cerebral palsy or Down syndrome, like my own children, aren’t abused or killed by their parents (15 seconds on Google will tell you that they are). What I AM saying is that it’s unfair to paint all of us with a broad brush of “the enemy” because we choose to advocate for children who may (or may not) be able to advocate for themselves. People like Robert, me, and many others are doing the best we can do for our children.

      Your parents may have gotten a “pass” because people perceived their life as being hard because of something they couldn’t control, but bear in mind that others of us (particularly women like me who are older and have a child with Down syndrome, which can be detected in utero) are judged for our choice to have a child with a disability when we could have chosen to abort the child. Some people may look at your parents and pity them, but those same people may look at me with zero empathy and say that “I got what I deserved.” Neither view is acceptable.

      Which of course brings us back around to the original point – a society that doesn’t value people with disabilities. Both self-advocates and parent-advocates are working to change that – we shouldn’t be tearing each other down in the process.