Achievement, Acceptance, and Ableism: Link Up and Let’s Talk About It

After Finn was born and we were told that he has Down syndrome and the initial shock wore off, I had what I think is a pretty common response, and that was, “Well, he maybirth announcement 03 have Down syndrome, but he’s going to blow Down syndrome right out of the water.”  MY kid is going to be different.  MY kid is going to be the Superstar of Down syndrome.  MY kid is going to make history with his achievements.  There was a period of time when I hoped and wondered if it might be possible for Finn to have Down syndrome on paper only, but not practically speaking.  I even spent some time seeking a modified diagnosis of mosaic Down syndrome, thinking that would be better than just straight-up Down syndrome.  In some way, I supposed I thought that if we could change the name of what he had, it would make all the difference in who he was and how his life would turn out.  Back then, I was still very much stuck on what I believed a fulfilling life consisted of, and it wasn’t disability.

That was a long time ago.  Seems like a different lifetime almost.  Coming to terms with it all can be so hard, so heartbreaking, that many of us search for solace in allowing ourselves to believe that if only they were normal, everything will be okay.

I think it doesn’t help that one of the first things most of us begin hearing when our babies are fresh out of the womb and their blood samples fresh out from under a geneticist’s microscope is the catchphrase “full potential.”  That term becomes ubiquitous, following our kids for years and years.  We are always trying to ensure that they reach their full potential; they are always working to reach their full potential.  To that end, nearly every interaction with our child becomes therapeutic and/or educational.  Many of us fill up our schedules with various therapies for our children, and even between therapy appointments, we try to make sure that every toy they come into contact with, every minute they spend in front of the television has some sort of therapeutic or educational value.

What does full potential actually mean, though?  Have you ever stopped and wondered?  Does anyone – Down syndrome or not – ever really reach their “full potential”?  How can potential even be measured?  To say “reach” implies that at some point, there is an arrival, a destination.  Why is there so much focus on “full potential” for kids with Down syndrome, but not typical kids? Why is there so much focus on achievement and intelligence among parents of kids with Down syndrome?

“Look what he can do!  He’s just like other kids!  He’s so smart!”  Seen and heard all the time.

Why is it so important to us that our kids be smart?  Why can’t we truly accept intellectual disability and instead try to outsmart it?  None of us would cop to believing that intelligence = value, but our actions, words, even our advocacy sure seem to belie that.   “More alike than different.”  What’s wrong with being different?

I’m going to go out on a limb and suggest that it stems from that old fear that was planted with receiving the diagnosis.  That fear of difference, that fear that we’re not cut out to be a parent to a kid with a disability.  I think that while that common initial determination to raise a Down Syndrome Superstar usually fades, it often never completely leaves us, and we end up feeding it with all kinds of therapeutic and educational endeavors in an attempt to normalize our kids.  What is therapy, anyway, except a measure taken to treat the condition of Down syndrome, to minimize the manifestations of it?  It is no doubt undertaken with love and hope, but when you get right down to it, it’s very much an effort to make our kids fit an arbitrary standard.  And it falls short of true acceptance – acceptance of difference, of limitations – and the ability to recognize that disability and limitations do not diminish a person’s value.

I am, of course, very proud of every milestone that Finn reaches, every achievement he makes – as I am with all of my kids.  And it’s hard not to brag, because we want the world to celebrate with us.  It’s a slippery slope, though, and I’ve learned – mostly through having Finn – that focusing too much on achievement is very much about vanity; that deeds and character and personal fulfillment run a lot deeper than achievement; and that achievement and intelligence have little to do with happiness and success, anyway.  If we place too much value on achievement, it tends to devalue some of the very people we claim to be advocating for: those who cannot achieve as much.  And it flies in the face of these values we claim to embrace thanks to having a child with Down syndrome: tolerance, acceptance of differences, embracement of diversity, even compassion.  What good are those values if, really, what we want is for our kid to be as normal and high-achieving as possible?

Ableism is defined as “discrimination or prejudice against people with disabilities,” or “discrimination in favor of the able-bodied.”  We, as parents of children with Down syndrome, would be hard-pressed to apply that term to ourselves.  But if what we’re doing is trying to make our kids as normal as possible, then isn’t ableism exactly what we’re engaging in?  (I’m going to get hate mail for this, aren’t I?)

Within the deaf community, there rages an ongoing debate about cochlear implants – a surgically implanted electronic device that can give a deaf or hard of hearing person a sense of hearing.  On one side of the debate are those who feel that deafness is not a defect, but just a way of being, and that deaf people do not need to be fixed.  On the other side of the debate are those who do believe that deafness is a defect, and if current technology and wisdom can help deaf people fit in, then those measures should be undertaken.  There is a similar debate in the dwarf community over limb-lengthening surgery, which involves breaking the bones in the limbs repeatedly over the course of several years and surgically forcing the genetically shortened limbs to grow to “normal” lengths – all in the name of helping those with dwarfism fit into normal society.  It seems drastic – sadistic, even – but the parents who put their children through limb-lengthening surgeries (it must be undertaken during childhood) do it out of love and hope and all the best intentions.  Detractors of these normalizing measures would probably not hesitate to call it ableism – a prejudice in favor of “normal” or non-disabled.

IMG_0268I wonder why the same debate doesn’t seem to occur in the Down syndrome parenting community with regard to all the measures we undertake to improve, treat, and normalize our kids – beyond ensuring their good health.  How much of those therapies are really more for us than for them?  How much do those achievements secretly relieve us and encourage us to believe that we dodged a bullet, and that through hard work and determination we got a high-functioning kid, and that’s better than a lower-functioning kid?  And what does it all prove, anyway – that we outsmarted Down syndrome?  That our kid got a better form of Down syndrome?  That our kid is going to be happy and successful?

I think this is a discussion that is long overdue.  Please join in the conversation – write about it and link up here (don’t forget to link back).  If you don’t have a blog, join the conversation by leaving a comment.

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42 Responses to Achievement, Acceptance, and Ableism: Link Up and Let’s Talk About It

  1. Becca February 5, 2013 at 3:50 pm #

    So coincidental that my post today was on this topic. Thanks, Lisa – linked up above!

  2. Holly F. February 5, 2013 at 3:51 pm #

    Especially with Early Intervention, I’ve struggled to know where the line is…the line between “helping” my son and seemingly trying to make him “normal.”

  3. Monica CRUMLEY February 5, 2013 at 4:16 pm #

    Really great and thought-provoking article, Lisa. You really have something here. As I grow with John Michael (5), I no longer feel caught up in the trap I was in to make him the smartest, least-affected by Ds, mostly typical, etc. I’m seeing his strengths and his weaknesses — it’s just who he is and and he’s wired. New parents will do well to read this, but don’t expect them to just “snap out of it”. This is a personal journey and we all have to ride our own wave.

    • Lisa Morguess February 5, 2013 at 4:24 pm #

      “This is a personal journey and we all have to ride our own wave.” Very true, Monica.

  4. Johanna February 5, 2013 at 4:20 pm #

    I added my link, although it is a little older. I have moved through a continuum of beleifs about EI and therapies since Phoe’s birth. I went from “I’m going to accept every possible support to make sure my kid is successful” to “I’m going to parent my kid the best way I know how”. I think the first perspective came from an angry/determined place and the second comes from a place of acceptance and love. I totally agree that our kids are different and their differences should be celebrated. I feel like I do this every day in my advocacy for her.

  5. Jennifer Varanini Sanchez February 5, 2013 at 4:22 pm #

    Oh my goodness…where do I begin. I ABSOLUTELY was one of those parents that upon getting Joaquin’s diagnosis thought that HE would be the DS superstar. I also pursued a Mosaic DS diagnosis to no avail. We did every early intervention and then some with Joaquin and then Sofia when we brought her home. Then I met Kathie Snow at a local conference and she turned my world UPSIDE down. She opened my eyes to a completely different way of thinking. What a breath of fresh air! This entire journey of parenting a child with different abilities is humbling and I shudder to think of the person or parent I would have been if I hadn’t had Joaquin and Sofia. As Joaquin turns 5 and the pressure of “fitting in” and being “normal” and going to Kindergarten gets closer and closer I find myself getting more and more anxious. I wish that I could fast forward the next 15 years and just enjoy my adult children with DS for whoever and whatever they may be. I too think the “full potential” catch phrase is an interesting one…of course we want EVERYONE to reach their full potential but I’m kinda done with it at the same time. I want to accept my children for where they are right now but with a healthy balance of helping them continue to grow and develop. I’d like to think that’s possible…acceptance and encouragement to keep reaching and never give up. I had a bit of an “a-ha” moment at Joaquin’s last IEP. I went into the meeting ready to battle and fight for every last minute of extra therapy I could get and somewhere in the middle of the meeting I surrendered to the process. I realized the “team” (well most of the team) actually did have my child’s best interests in mind and instead of going in with my mind made up with what HAD to happen, I listened and embraced the conversation and in the end I think the best blend of school and extra support was achieved. I’m growing still…every day. So, I think the key for me is to follow my child’s lead and to find his and her strengths and just build upon that with the ultimate goal for my CHILD to be happy and fulfilled individually. Not for ME to be happy and fulfilled because they are “such and such” or “so and so” or get “this and that”…but that Joaquin and Sofia grow and develop to be exactly who they were meant to be with whatever differences and limitations they may have. We are just so fortunate to have this unique and DIFFERENT parenting journey with our kids with DS. We just need to embrace and celebrate this road less traveled.

    • Lisa Morguess February 5, 2013 at 4:27 pm #

      Beautifully said, Jen. And I LOVE Kathie Snow. When I read Disability is Natural when Finn was around a year and a half old, it really just confirmed so much of what I already felt in my heart. Reading it gave me the courage to say ENOUGH to EI and start on the path of really allowing Finn to be who he is and not who I wanted him to be.

    • Yes February 6, 2013 at 12:33 am #

      “So, I think the key for me is to follow my child’s lead and to find his and her strengths and just build upon that with the ultimate goal for my CHILD to be happy and fulfilled individually. Not for ME to be happy and fulfilled because they are “such and such” or “so and so” or get “this and that”…but that Joaquin and Sofia grow and develop to be exactly who they were meant to be…”

      This is what “full potential” really means :). If we’re working toward something else, we are off track. Of course, it is always a bit of a mystery to understand what it will take for a person to be happy and fulfilled as an individual, but our kids help guide that. It is our job to listen carefully!

    • TUC February 6, 2013 at 10:33 pm #

      Jennifer,

      I loved this comment… wish it was a blog post that could be linked up so more people could read this wonderful perspective.

  6. Michelle Ray February 5, 2013 at 4:54 pm #

    Bravo. Love this post.

  7. Yes February 6, 2013 at 12:24 am #

    This is a full-circle comment 🙂 I wrote a post a long time ago on Bridget’s blog about services and the balance between getting the help our children (may) benefit from, and not being sad about their differences (http://bridgets-light.blogspot.com/2009/01/living-in-world-of-possibility_31.html) .

    Interestingly, in this ^ post, I linked to a post on your blog about Finn. Also interesting is that I talked about waves, which relates to Monica’s comment above: “This is a personal journey and we all have to ride our own wave”

    Here’s part of what I wrote: You might not see it often on Bridget’s Light, but I have my tough days, too. We all have our moments when things seem out of control, overwhelming or filled with with uncertainty. It comes in waves. The waves were much bigger and flattened me a few times when Bridget was tiny. Today I’m finding that I don’t have to jump nearly as high or as often to make it over them. As a family, we have found our center of balance, and have learned to accept and celebrate our lives as they are today. Jumping waves is much easier when you’re holding hands with someone you love.

    Check out http://bridgets-light.blogspot.com/2009/09/disability-is-natural-part-ii_07.htm
    and http://bridgets-light.blogspot.com/2009/09/disability-is-natural-part-iii_11.html for some older (yet relevant) thoughts on this subject.

    Thank you for this discussion. It is an important one! I loved this post, and I am looking forward to hearing what others have to say on the issue as well.

  8. Stacey February 6, 2013 at 12:44 am #

    To me, the “where to draw the line” is when the therapy or treatment goes beyond helping & supporting the child to be the best they can be in the body they were born into, to changing the child because you think something is wrong with the body they were born into. Physical therapy can be a great tool in helping a child with low muscle tone learn to use their legs, or it can be a brutal attempt to make a child walk who isn’t yet ready in some way, which might not even be physical. Cochlear implants, to me, are a tool to help a child hear better, and they can be unplugged if the child chooses to live without them. Limb lengthening surgery and growth hormones offer no benefit beyond some increased height; they are designed to change the child for no other reason than someone thinks the child might be too small. To me, that’s wrong. You can help your child be better, you can support your child in being different, but you don’t change your child. I hope that makes sense, I’m trying to get my thoughts out quickly before heading out on vacation!

  9. theeisforerin February 6, 2013 at 3:29 am #

    This is a great post and topic, so thought-provoking. My 3 year old is a “typical” kid but speech delayed, and I think that although I’m sure this pressure to normalize is more keenly felt for parents in the Ds community, it’s something that has seeped into ALL parenting in our culture. The mommy group I’m part of on Facebook is steeped in anxieties about development, and you wouldn’t believe how many typical kids are in therapies of various kinds. One woman’s 6 month old was referring to PT because she wasn’t rolling over or sitting up yet. Everyone with a speech delayed child, including me, is on edge waiting for the other shoe to drop, for an autism diagnosis perhaps.

    It really has made me think so much about why we are so fixated on having “normal” children. Why it is SO important for our kids to meet these milestones “on time.” The pressure is not only anxiety-inducing, but I think is sucking the joy out of this special time when our little ones are home with us and growing so much – at their own pace. It’s oppressive.

    If you have Netflix (streaming), I have a great documentary to recommend called Loving Lampposts. It describes a similar split in the autism community between people who are trying to cure autism, and those who are advocating for “neurodiversity,” meaning accepting autistic people as they are and learning to value them without trying to fix them. People who favor neurodiversity are also not totally opposed to therapy, in fact many of them still do it, but the goal is not to make autistic people act more like everyone else, but to help them live happy lives and help other people recognize that they are worthy of respect even though their minds work differently than most.

    • Chaya February 6, 2013 at 4:54 am #

      My thought on this is that as a society, we are obsessed with measuring things, and thus we value things that can be measured. Age of achievement of various milestones is something tangible and concrete that we can measure and compare. Later it’s IQ scores. SAT. GPA. Salary. It’s not like these things have any intrinsic worth, just a way that we can compare and see where we stack up in society. And parenting a special needs child means letting go of all that and just letting them be. Honestly I think all of society would be improved if we could all let go of our measuring sticks and stopped worrying about where we stand, if our kids are getting “every advantage” or at the top of the percentile rankings. The value that our children have and what they bring to this world may be harder to quantify but ultimately may be more valuable than the high IQ score or GPA. In addition, I don’t think the child’s intellectual and physical development can be uncoupled from emotional development, and if we are focused on milestone achievement at the expense of just nurturing and loving our children, their development will ultimately suffer. I am not giving up any of our EI or special ed, and I will continue to sing to her and play games with her to promote her development, but the moment it becomes a big stress and pressure and stops being fun is the moment we’ve crossed the line into actually harming her developmental trajectory.

    • Lisa Morguess February 6, 2013 at 5:59 am #

      Erin, there is a lot of discussion about that divide in the autism community in that book I recently read, Far From the Tree. I found it intriguing, and yet again reminded that this discussion just doesn’t take place within the Ds community.

      I totally hear you about how many seemingly typical kids are in one kind of therapy or another – especially speech therapy. I noticed that way before I ever had Finn. I think people ARE afraid that every milestone not met “on time” might mean an autism diagnosis. I also think that parenting has become so competitive that a lot of parents are just worried that their kid will fall behind, not be the best, the brightest, etc. I read somewhere – maybe in that book, actually, that it’s not uncommon these days for some parents to push for a diagnosis even if none apply because they see therapy as a way to give their kid a leg up. Sad.

  10. Sar February 6, 2013 at 12:14 pm #

    Hello

    Long time reader, first time poster.

    I work with students with special needs and was wondering how you felt about EI and the other therapies as a means of school readiness?

    It may not be fair, but I have seen little to no EI greatly affect a student’s placement.

    • Lisa Morguess February 6, 2013 at 3:32 pm #

      Yeah, that’s really not fair. And “readiness” and “placement” are two different things. A child with a disability – especially an intellectual disability, like Down syndrome – is very likely NOT going to be “ready” for kindergarten, for instance, in the same way or at the same level that a typical child will be “ready.” It sounds to me more like the school district doesn’t like it if parents don’t “play ball” so to speak. EI doesn’t address anything academic, anyway, so we’re really probably talking about social and emotional “readiness,” and it’s ridiculous to think that those are areas that only EI can properly address. The fact is, the very best way to address and encourage social and emotional growth is through inclusion – not just in school, but in community.

      So, my take? If a child is denied placement in a “typical” classroom because they’ve had little to no EI, the powers that be are in the wrong, and they’re not following the law, either.

      This will very likely be our own situation, as we dropped EI when Finn was 2.

  11. mamatoten February 6, 2013 at 5:53 pm #

    is it okay to link to an old post ?

  12. Alicia February 6, 2013 at 5:59 pm #

    I know this probably goes without saying, but even with “typical” kids, it’s still, as Monica said, a wave we all have to ride. My 4 year old just got his first preschool progress report, and the fact that there were 15 things (out of 48) marked “working on” instead of “good” almost sent me into a full on anxiety attack. I’m not working with him enough at home, I’m wasting his potential, and it’s all my fault! Logically, I know those are laughable statements, but emotionally, I have a long way to go.

    • Lisa Morguess February 6, 2013 at 6:06 pm #

      Alicia, I know. I think we all do this to some degree, even with our typical kids. I think it has very much to do with the competitive parenting culture we currently live in, and I think it’s especially prevalent among mothers because generally speaking, we are the main caretakers and I think we tend to get our identity and sense of our own worth as mothers through how well our children are doing.

  13. Lise February 6, 2013 at 8:40 pm #

    What do you think of this? http://www.ds-health.com/psurg.htm

    I only mention it because I remember watching a documentary a while back about this very subject, and my gut feeling was that it was wrong on many levels. I don’t have a child with Down Syndrome though, so I’m interested in your thoughts.

  14. krlr February 7, 2013 at 11:39 pm #

    I think you’re a gorgeous writer but I really, really disagree with you on this one. And since I don’t think anyone else is going to be contrarian, I linked above. I’m trusting the “let’s talk about” will limit your readers’ wrath.

    • Lisa Morguess February 8, 2013 at 3:39 am #

      I’m glad we all have a forum in which to express our perspectives. Thank you for linking up and sharing your thoughts and experiences, krlr.

  15. ambermalmberg February 8, 2013 at 4:16 am #

    Oh my gosh, I loved EVERYTHING, EVERYTHING, EVERYTHING posted here! This has been a great topic to follow!

  16. Lindsey February 9, 2013 at 12:36 am #

    Hoping it’s ok for me to chime in, although my child does not have Down’s but is autistic.

    He was diagnosed just less than a month ago, but I have known since October.

    My beautiful baby boy was born 21 months ago, sat up, crawled, started walking on schedule. Smiled, talked, interacted all on time. Happy, sweet boy. And then at about 15 months he started to fade away, and there was nothing I could do about it. By 18 months he was unreachable.

    Not only unreachable, but he would not permit me near him unless it was on his terms. I could not play with him, read to him, hold him unless he was in the mood. Heartbreaking – doesn’t begin to describe it.

    Early intervention started coming when he was 19 months. They helped us pave a way into our boy’s world, or a way for him back to ours? In any case, Just two months later, and we are able to interact with our boy again, and occasionally see his smile and meet his eyes. We can sit near him and he doesn’t flinch or scream.

    Now I know this is different because he wasn’t “born this way”, and because so many have proved that autism CAN be recovered from. Where Down Syndrome is a chromosomal difference, no one knows what autism really is.

    I am thankful for our EI ambassadors for giving us our boy back, even in the smallest of ways.

    • Lisa Morguess February 9, 2013 at 1:06 am #

      I completely understand, Lindsay. Like I said, though (at least I think I did), I’m really just talking about Down syndrome. I can’t address any other disability or condition, as I have no experience or first-hand knowledge about any other. Peace.

      • Lindsey February 9, 2013 at 1:34 am #

        Understood. I definitely think there are big differences. Peace to you too. 🙂

  17. Hannah Edwards February 14, 2013 at 3:05 am #

    Firstly thank you Lisa for the post above. When you flagged this topic was coming I really wasn’t sure where you were headed, but I love what you have written and the discussion that has followed.

    It has taken me a bit of time to get my thoughts together to comment and have re-written what a wanted to say a number of times, but here goes.

    For me, my most important job in life is that of a mum to my two children. My journey into motherhood was complicated, by a premature birth, a rather significant heart defect and the diagnosis of Down syndrome all in my first born son, Flynn. As a mum, I feel strongly that I need to provide two things to my children. The first is a warm home (not house) where individually we feel inspired, loved and cherished unconditionally. While my childhood was by no means luxurious, my sense of self was distinctly shaped by my own mother instilling the above in my brother and I.

    The second thing I feel we need to provide is opportunities. And the reality is opportunities look different in different families. There is no single “recipe” that can be followed, and as a parent it is our job to determine those ingredients that fit our children best. For some children you might add a splash of music, or a cup of baseball. For Flynn it was a sprinkle of speech pathology and OT with extra dancing and soccer.

    Would I recommend early intervention if some one asked my opinion? Absolutely. Do I feel that it benefitted Flynn? Without doubt.

    BUT (and it is a big one) … from the start we were in control.

    In Australia, I believe the Early Intervention model is quite different from the US. There is no “set” EI program for children with Ds to join, we were certainly advised to access therapy for him, but there was no one program that we had to make fit. As a result we have personally, and independently selected who would have the privilege to work with Flynn and as we paid for their service, we had complete control over what areas we wanted assistance with. When a speech pathologist set a goal around Flynn being able to correctly label toy fruit, we changed, because what she failed to see was that although he might not have been able to correctly label a miniature toy lemon correctly, he could remember what actual fruit we needed to buy when we went to the grocery store.

    When it was recommended that he complete a developmental assessment at 3, we politely asked what additional information would this provide, and when a satisfactory answer wasn’t given, we chose to look at alternative pre-school options, and they were fabulous. This “alternative” has led Flynn to be the young boy he is today. One that walked into his first day of “big school” and confidently and happily waved bye-bye to Mum and engaged within his classroom environment. .

    Too often mothers feel judged by others, and I think that can be said for mothers within the Down syndrome community. I hope that this discussion helps empower mothers to really look at what opportunities they are providing to their children with Down syndrome and reinforces that there is no one path to take. That if at any point the path you are on is leading you in the wrong direction, to turn around and choose a different one.

    • Lisa Morguess February 14, 2013 at 4:39 am #

      Really beautifully said, Hannah. Thank you.

  18. Sheila February 17, 2013 at 10:11 pm #

    I think all parents want to help their children, which is why we feel the need to get them any and all help they need. And I’m not even sure what you can label ‘ableism’ and not. On the deaf example, if it were me, I’d want to try an implant. I want to hear. For my child with Ds, I am open to therapies and anything that helps her learn and grow, but if it is not agreeable to her, that’s where I draw the line. If it feels wrong to me, also where I draw the line. A lot is instinct. If something is causing you a lot of anxiety and stress or your child, it’s probably not a good idea.

  19. Galit June 9, 2013 at 2:41 pm #

    Hi! In my link http://matir-asurim.blogspot.com/2013/06/more-about-potential.html I suggest that:

    The struggle around how much to put into “normalizing” the child comes from the same parental headspace as how much to push a child into sports, music lessons, extra enrichment etc. vs. “letting them just be kids”. To what extent do we try to “maximize our children’s potential” vs. celebrating them “just the way they are”?

    How does that fit with your experience?

    • Lisa June 9, 2013 at 3:43 pm #

      How does that fit in with my experience? As a parent of seven kids, I actually do mostly celebrate my kids just the way they are and let them just be kids. While my husband and I endeavor to instill in each of them that they should always do their personal best in whatever they undertake, we are not parents who push their kids into a lot of extracurricular and enrichment activities. We have one son who plays Little League, and he’s passionate about it. The girls have dabbled in dance and gymnastics, and they’ve all taken some basic piano lessons because they wanted to (because we have a piano, and my husband plays). All the kids have taken swim lessons because knowing how to swim is a safety issue. Other than that? We let them be kids. They spend a lot of time riding their scooters, running around the neighborhood, building forts, and so forth. I think there is way too much focus on achievement in today’s parenting culture – everyone wants to give their kids a leg up, everyone’s got their kids in tutoring, everyone has their kids enrolled in multiple sports and other enrichment activities. It doesn’t jibe with my own personal parenting philosophy.

      So, to answer your question, my feelings about ableism and achievement and how that manifests in how we are raising our son with Ds, it extends to our other, “typical” kids as well.

      • Galit June 10, 2013 at 1:51 am #

        Thank you! I think that speaks to what I was thinking about — you have a laid-back parenting style which you apply equally to all your children. A more gung-ho parent would likewise be hyper-achievement-oriented with both typical and “disabled” children. In other words, it may be more about parenting style than about able-ist culture. Or do you think of them as the same thing?

        • Lisa June 10, 2013 at 3:40 am #

          Hmm. I wouldn’t say I have a laid back parenting style, necessarily. I’m positive my kids would not describe me as laid back. I think my priorities just lie elsewhere than so achievement oriented. I think we live in an ableist culture, and that is probably what has bred such a competitive, achievement oriented parenting culture. I think there is way too much focus on achievement. Achievement does not equal success, and success is defined in many ways, anyway. I think our culture defines success in a very material way: if you have received a high quality (expensive) education, if you make a lot of money, if you have a nice house and nice things and take nice vacations, then you are considered successful. Those aren’t the values I want to instill in my kids. I am more concerned with building character, integrity, self-esteem, teaching them how to have healthy relationships, to be good people with good hearts. I don’t think we as a culture pay nearly enough attention to that sort of thing.

          • Galit June 10, 2013 at 11:54 am #

            That makes a lot of sense.

  20. Gogu Bordel April 18, 2014 at 8:14 am #

    Finally an intelligent attitude in the entire world. As a parent of a DS child, I’m only going to engage in health care issues, and not force her fit into the “normal” society by all means.
    After all, happiness is our all final goal and we cannot take the effort out of the equation.
    Otherwise, it would contradict the definition of happiness: if a huge effort is needed to attain something, they can be at most disappointed at the end.
    Disappointment and frustration apply to them too, and we’d just make them the most unhappy living creatures on earth !
    Death might not be as bad as a life of torture.

  21. Gogu Bordel April 18, 2014 at 8:33 am #

    I forgot to add that happiness (taken as what you got over the amount of effort) is something that belong to the nature, to all living creatures and to some extent even things. Those that contradict this definition are not even a thing, are something that departed so much from the nature, that I cannot define. You should ask Galit if she has a DS child in the first place, or even if she knows what a trisomy is.

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  1. Therapy, Ableism, and Why We Do What We Do « The Garden of My Heart - February 5, 2013

    […] We decided to explore some of the Big Questions through our blogs and a blog hop. Please visit Lisa’s blog and check out what other parents are saying about ableism, achievement, and […]

  2. Down Syndrome: More Alike Than Different..and Yet - February 5, 2013

    […] Originally posted on January 16, 2012. Reposting as a part of the Ableism Blog Hop over on Lisa’s blog. […]

  3. A Picture of Down Syndrome, in So Many Words | Thoroughly Modern Messy - May 12, 2013

    […] http://www.lisamorguess.com/2013/02/05/achievement-acceptance-and-ableism-link-up-and-lets-talk-abou… […]

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