Monday, July 29, 2013

The special needs community: united or divided?


The  special needs community: Is it united or divided? That question's been on my mind since I got back from the BlogHer conference, which was the usual wonderful whirlwind of mingling, musing, chatting, connecting and squee-ing. I ran a town-hall type meeting with the awesome Jen Myers on HealthMinder Day, part of the Special Needs and Caregiving track and please, won't you come next year?!

One topic that came up in conversation in discussion and on my Facebook page is the divisions that people feel exist within the special needs community. If we share similar purposes and goals, people wondered, why does the community feel so divided at times?

I've felt that as a parent blogging community, we are united in our goal of advocating for acceptance and inclusion. We speak out when celebs like Drake use insulting words about disability. We write openly and fervently about our wishes that people would spare our kids the pity and see all their abilities, not just their disabilities. And we are very united in celebrating our children's progress and achievements. While I was at the conference, Max's teacher emailed me to say that during a school fire drill he led his class to their meeting point, and then back to class. I shared that on Facebook, and got a whole other rush of bliss from the "Go Max go!" responses.

As parents, we also share a goal of bettering our children's lives. Of course, it makes sense that some of us rally around associations and foundations for our children's specific disabilities. But perhaps we could be doing a better job of sharing resources. As Meriah Nichols of With A Little Moxie said on Facebook, "I'd love to hear more talk and ideas on cross disability collaboration and community building—including more collaboration between people with disabilities and parents who have kids with disabilities...."

I knew what she meant. As the parent of a child with special needs I tend to feel as if I don't have a rightful part in the adult disability dialogue, and I'm always grateful for whatever feedback and insights I get from adults with disabilities I've connected with online. Meriah is deaf, and has a child with Down syndrome, so she inhabits both worlds. Louise Kinross of Bloom, another online friend I met up with at BlogHer, has a 19-year-old with a rare genetic syndrome and manages communications for Holland Bloorview Kids Rehabilitation Hospital, so she also has a good handle on the topic. As she noted, "The disability community itself needs to look at how it discriminates between different types of disabilities—instead of uniting to achieve human rights for all."

(I had to smile when Louise emailed to say she'd stopped by a BlogHer workshop called "Rocking Your Otherness" that she thought had to do with differences—except it was about style and beauty.)

Me, I've felt a divide when I hear about programs geared toward one type of special needs. By that I do not mean the fundraisers or awareness events, I mean efforts like the "autism-friendly" Broadway performances. By name, they're exclusionary to kids with other special needs who have sensory issues. Calling them "sensory-friendly" would be far more welcoming.

What are your thoughts on the topic? I wish you could have been with us at BlogHer to discuss, but by all means, have your say here.

Illustration: iStock

23 comments:

  1. I can't wait until BlogHer '14. I would love to meet with you and the other bloggers who have kids with special needs. My daughter Josie has a terminal 18q deletion, Dyspraxia, and Hypotonia.

    I know what you are saying regarding the programs geared towards a specific disability. When I encounter such events, I am faced with the dilemma of whether or not to sign Josie up for something I feel she would benefit from even if she doesn't meet the label.

    I have joined so many parent groups since Josie was born. I know there isn't a crystal ball that can predict Josie's future, but I would love to e able to connect with adults with similar diagnoses to get a glimpse of what may be in store for us.

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  2. Hi Ellen, great post, thank you for the questions for debate: I think the issues you've posted regarding united/divided positions parents may either come to the table with or take staunch stance upon, are underpinned by the somewhat confusing world of trying to first navigate: the broad classification of 'special needs' (of our children) and then the next task of figuring out where our kids (and we as parents) 'fit' into the spaces of that broad category.

    As parents, we try to simultaneously navigate through multiple & possible trajectories and manage these all at once. As you mentioned, 'sharing' "a goal of bettering our children's lives" is what determines a common ground for parents, and may at times, continue to divide some of us when it comes to advocating for our kids. I guess the task is the bridging of this goal (by parents) across a broad landscape, which is of course, another debate unto itself. Having said all of this, the best kind of support I've found as a parent has been through my son's disability unit at his school where there are many children with different needs and diagnoses, speaking with parents and grandparents with children across various needs has given me insight across multiple issues for helping my son in his learning -outside of just 'Autism' alone- which has been helpful along the way...

    Cheers for the insights, Carmen in Cairns. :)

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  3. It's both. We have a lot in common, yet at the same time, there are significant differences between various disabilities, and there are differences even within an area of disability. Even within specifically the Fragile X community, there are differences of opinion as to whether a gluten free diet helps, which medications are the best, and how to best cope with crippling anxiety.


    My boys have a dual diagnosis of Fragile X and autism. We were offered the chance to check out a retreat specifically for kids with Down Syndrome recently. I decided against it, partly because I didn't want my kids to "stand out" any more than they already do, but also because this retreat would be extremely social and my boys have a lot of trouble with crowds and mingling with strangers. They wouldn't have had a good time.

    Still I appreciated the offer, and I think when they promote something for children with autism, they probably don't mean to exclude anyone. I bet if it was brought to their attention, Broadway would change the wording of their special performances.

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  4. @: Bonnie@TheFragileXFiles: I agree here that it can also be both. I remember when my Dad's partner finally received the diagnosis of Angelman Syndrome for her daughter, the sheer relief of finally, after many long years of mis-diagnoses and working within a category she never really felt 'fit' for her daughter, and then, finding a 'community' of like-minded parents when she attended her first ever Angelman Syndrome conference - it's understandable how advocacy around specific needs can at times divide, even though at its heart is a fundamental, and perhaps natural need to gravitate towards like-minded people/issues.

    I appreciated your words here: "Still I appreciated the offer, and I think when they promote something for children with autism, they probably don't mean to exclude anyone."

    Cheers,
    Carmen in Cairns

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  5. I know that in my little niche, we often feel like the "red-headed stepchildren" of the disability world, simply because mental illness is still often seen as poor parenting. Our kids often have dual diagnoses of cognitive disabilities or autism spectrum disorders, but mental illness, more often than not, is the primary issue that trumps the others in terms of how we and our children are regarded. Our children have the one disability that insurance companies in all 50 states still aren't required to cover. We are told we don't instill discipline, or we are poisoning our children with medication.

    I think, by and large, we want to be more integrated with the disability community, and we work hard to not carry a chip on our shoulder. Many children with physical disabilities experience anxiety and depression sometime during their lives, so we have a lot to gain by working together.

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    1. I can totally agree with what you said about the 'red headed step-child' bit, Chrisa Hickey. All four of mine have BP and ADHD and, and, and...guess who people look at when they find out. It's really hard, and isolating. I have yet to 'meet' another blogger on the internet whose children carry the same diagnosis as mine. NOT ONE. It took me years to deal positively with the attitude of, 'You must have done something wrong for your kids, to be that way...'

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  6. Sigh. Yes, our movement is in silos. Sometimes I feel alone in taking an approach that blends the issues of aging with parenting children with disabilities. I am on the extreme end of the spectrum representing the view that if we truly want a tectonic shift in the way our society thinks (and acts on) the giving and receiving of care, we must speak for ALL who give and receive care. With those numbers (especially now, with the aging demographic), we have a better chance of creating a better future for our kids AND ourselves. I think the idea of dependency is demonised in our society and I think that's dangerous for all our children with disabilities (but it is for my 92 year old Mom as well). Of course we will all want to have private conversations amongst our 'homies', ie. other parents of kids with the same condition as our child has. But we should not limit our conversation to be diagnosis specific, because staying in silos will not change society.

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  7. I know how easy it is to get wrapped up into our own disability worlds, but I agree when they title an event specifically towards a certain disability many parents may feel their child doesn't belong there. However the only real togetherness we could probably agree upon would be doctor visits or insurance fights. All other interactions would be different because of our children's strength and weaknesses due to their disabilities. For instance, my son has spastic quad cp with intractable epilepsy, vision/hearing deficiencies, developmental delay, non verbal, non ambulatory. In my community I do not know of any other child like him. Very rarely do I even come across another child with cp. There are two other children in this family (his cousins) that have cp. One has mixed cp, verbal, high functioning cognitively, but wheelchair bound. The other is somewhat verbal, able to walk, developmentally delayed. With CP being such an umbrella term it would be difficult even to come up with an event that would bring these three children together, you know? In this area (Southeast Georgia) you honestly do not see a large amount of children in a wheelchair like my son. You never hear of events for children with cp. In Savannah (an hour and a half away) you hear of Autism events, Down Syndrome events, and of course March of Dimes. If there are cp events, they do not advertise very well. It would be nice to have some kind of joint effort that could include all our children together possibly with adults. I just don't know how well it would work.

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  8. Having a child with hydranencephaly and building a foundation in order to raise the voice of those families affected by this rare neurological disorder really gave me an enlightened perspective to this topic. While looking from the outside in, you see the special needs community as a group on a mission with the same goals: raising awareness, advocating for equal rights and quality care, building family support systems, and such. But when your part of the special needs community encompasses such an immensely small number in relation to the population as a whole, you feel like you're lost and alone. You do not it in to the "typical family" community, even if you have other children who are "typical" yet you do not fit in to a substantial portion of the special needs community either... community support groups generally focus on more well-known conditions: cerebral palsy, autism, down syndrome, just to name a few. Even though my son had CP due to his primary dx of hydranencephaly, we still stood out and found ourselves segregated in that community as well. It's a tough place to find yourself!

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  9. I just want to let you know there is hope. Across the US the AMC Theatre Group does a "Sensory Friendly" movie showing of the latest kids movies. Lights are left on low and the sound is not as loud. While I see a lot of Autism kiddos like mine there is no label by this company that says its only for Autism so hopefully more organizations will get the hint in the future!

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  10. I often feel torn. My daughter is nine and headed into a regular education fourth grade class. She struggles to make close friends but has school friends. While I would love for her to have a friend with a disability that she can relate with and share a special connection I want more than anything for her to have friends in her class at school. I also feel like her own self image might change if we were to chose special activities for people with disabilities. This summer, she qualified to attend a special needs camp for a week but my little girl would be grouped with people ages from 6-77 of all variety of cognitive and physical disabilities. I just can't quite see how that is the right setting.
    So while I like the idea of working together for a cause or mission I'm not sure I want more special activities for my child. I want more regular activities where she can be included with all her peers.

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    1. what disability does your child have?

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  11. This post is so thought-provoking. I agree wholeheartedly; we are united on some fronts and divided on others. I think that some of that division comes from the variety in the special needs world...we all share the challenge of obtaining acceptance and inclusion, but "special needs" is such a broad term; some kids are physically affected, others are cognitively affected, some are mentally affected, and then there's everything in between, so it's difficult to find common ground.

    And a major reason I started to blog about my CP was to address that disconnect that you alluded to in your post. I discovered early on that parents appreciate hearing from teens and adults who have "been there," people who have been through what their kids are going through now. And that's one of my favorite parts of blogging...I love receiving comments from parents who say that feel less alone, more hopeful, and more enlightened about their children's futures.

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  12. It seems to me that parents of children with disabilities do have a place in the adult disability conversation. I would like to think that we do, anyway. We may never be able to fully share their experience, but our kids will be adults with disabilities before we know it and we are the ones who will be guiding them through that transition. That community is an invaluable resource for the kids who will soon be joining them--isn't it in everyone's best interest to the keep the conversation open?

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  13. This is a valid question. I, for one, can say that we - since we do not have a diagnosis - feel left out very often. We do not fit in anywhere and sometimes that's really difficult for me.

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  14. Bravo for expressing in words a dilemma which I have contemplated for quite some time. The great divide needs to become "united we stand". No doubt our children present with a plethora of various issues according to their diagnosis. However, there are certain commonalities regardless of intellectual level, level of mobility, level of verbal skills or lack thereof.

    Some but not all of the issues across the board that these children and adults (they all grow up and become adults eventually) deal with daily is bullying, societal acceptance, self esteem issues, difficulty with making friends. I could go on but I believe I have given enough examples. Bottom line, we are all in this together. There is no I in the word we. Well done... excellent article.

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  15. We are divide and it sucks because some diagnoses groups are well organized and ran but some,including CP, have no programs that allow people to come together.

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  16. I agree with what you said if you're striving for inclusion don't exclude certain groups of the "special needs" population.

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  17. Hi Ellen -- I'm at the library near our cottage :)

    Have you read Far From The Tree by Andrew Solomon? He talks a lot about how parents he interviewed for his book (parents of kids with a whole host of differences) had different concerns about being "associated" with some of the other families. His book is super long, but he synthesizes everything in his first chapter. I think you'd find it interesting.

    So grateful we could meet in person. xo

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  18. My daughter doesn't (didn't) have an organized community that we could get support from when she was little. I really missed that. Maybe her diagnosis would have been easier with some camaraderie (for lack of a better word). And right now, I often feel that I don't use the terminology that other parents might use to describe their kids. I'm 55. When Lindsey was diagnosed, there were fewer words to describe her disability. Now instead of raising a special needs daughter, we are to say: raising a daughter with special needs. I guess I just feel that everything seems to need to be so politically correct. I'm just trying to do the best I can and can't always keep up with the latest lingo. I've never tried to be offensive and if some of my descriptions are to some people--maybe it isn't because I'm trying to offend, maybe it is because I see it differently. Can't we agree to disagree? Doesn't that make more sense?

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  19. This is a brilliant post. Thank you. I was in that forum at blogher and I never speak out about this but my dd has fetal alcohol spectrum disorder and frankly if you want to talk about a hierarchy if special needs well her dx sits near the very bottom of the list. There are tons of programs here for autism and I absolutely know that autism is a tremendously wide range and a very hard dx too. However as a parent of a child with Fasd who watches and yells and complains and writes and advocates endlessly it disgusts me that my child's dx means less support at school and less help in the community and it means people here still look at her as if she can control that dx bc it is behavioural - which it is not- it is actually a brain injury sustained prior to her birth, prior to us adopting her. I sit on various parent support groups and I speak to other adoptive parents and I hear them say often well we asked our child's doctor for a different diagnosis ( autism) so they will get help and support. And the doctor validates that knowing full well what many experience when they have kids with FASD. So boy I sure understand this argument and hate that we are so very divided. In fact I think it is the divisiveness that government relies on to keep us from getting the funding and help we need.

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  20. Thanks for this blog. I think what we need to come to is a realization that it's hard to speak of all children with disabilities or special needs as being under one umbrella. Even within one diagnosis, like autism, there can be such a wide range of people that it's hard to put it all together. My son has autism, epilepsy and is non-verbal. It's hard for me to relate his experience to that of a person with aspergers, even though I know they fall under the same spectrum.

    We need to stop dividing ourselves. There are such divisions within the community of people with autism, frankly, I don't want to step into the fray often. I feel like my son and I don't really belong to the community. Particularly when there are parents who scold each other on websites about dietary invervention, diet, different types of schooling etc. Once we accept that what one child needs might not be what another needs, we'll be much better off.

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Thanks for sharing!



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