a conversation about disability, equality, and the bachelor finale – this is my life, people

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{image is a photo of Chris Soules, better known to Bachelor watchers as The Farmer. Don’t judge.}

Ableism (/ˈeɪbəlɪzəm/) is a form of discrimination or social prejudice against people with disabilities. It may also be referred to as disability discrimination, ablecentrism, physicalism, handicapism, and disability oppression. – Wikipedia

On Tuesday, I took the day off from work so that I could attend the final dress rehearsal of Katie’s play, in which, as the understudy to the lead, she had the opportunity to play the part. Taking the whole day for a two-hour play? Well, that was a bonus. Thank you, work.

After getting the kids out the door, I settled back into my bed, because I could. And then I put on the previous night’s Bachelor finale because, well … see: I could.

My phone then buzzed with a text message from my friend Alysia. What follows is our conversation, shared with her permission, because we thought perhaps you might like to join in. As I said to her somewhere in the middle, I – we – have no authority on any of this. We’re just two moms bumbling through some pretty thorny issues (see what I did there?) and thinking out loud as we try to figure them out together. As you do.

Editor’s note: I’ve made slight changes to the order of the texts to make them (mostly) make sense.

Rose_katie-couric

Alysia, referring to my post earlier that morning about Katie calling me out on my internalized ableism: You have my brain buzzing this morning. Or maybe Katie does. Or you both do.

Me: She does that. It’s evil. 😉

Her: So does that mean that buddy programs are ableist?

Me: I don’t think they have to be – IF the buddies think of their peers as EQUALS.

Her: Right, that’s what I’m struggling with. Does the fact that the “buddies” are volunteering to be paired up negate the idea that they’re equals?

Me: “Hey, I’m going to join up because I want to make a new friend,” is very different from, “I want to be a good person who pretends to be a friend out of the goodness of my heart.”

Her: Right. So not when it’s to put on a college application.

Me: It can be on a college application that you helped the organization spread the word about why REAL friendships are important for everyone.

Her: So does one volunteer / ride bikes / raise money because …? I don’t even know how to finish that statement. Where’s the line between wanting to help and being ableist?

Me: Yes, one does, because support is needed.

Her: What about peer mentor programs?

Me: When the word “mentor” is used for typical kids pairing with same-age atypical kids, yes, it’s ableist. But without the word mentor (and the ideology that it represents) the programs can be great. We do need to facilitate connection / friendship / interaction opportunities for those for whom they might not otherwise present themselves.

Her: Right – it makes no sense for equals to be mentoring one another.

Me: Right. That’s why the word mentor is inappropriate. They are PEERS. Peers are equals. Equals can’t, by definition, mentor one another.

Her: A place where everyone is equal.

Me: Yup. But upperclassmen can mentor younger kids.

And pairing same-age kids together to support one another? Great. A buddy system? Awesome. Creating opportunities for kids to meet, create real friendships, leverage each other’s strengths? Perfect. But having same-age typical kids MENTOR their disabled peers? That reinforces unequal relationships. That IS ableism at its worst.

Our kids need a support system. But that doesn’t mean that those who support them are superior to them, just different – with different skills and relationships and perspectives.

Ed note: I’m adding after the fact: I think ALL kids need that.

Her: My head is still spinning 🙂

Me: Note: I’m saying all of this with an air of authority and conviction that I do not have. But these are my thoughts.

Her: I get it. It’s why I asked you 🙂

Me: Read this.

Her: I remember when you wrote that. For [our mutual friend], right?

Me: Yup.

Her: I’m just stopping to question everything now. Like does anyone ask the kids who participate in those buddy programs if they like being paired up with a buddy?

Me: I hope so. Everyone on every side should have just as much autonomy as anyone else.

Her: My mom had a friend named Connie. She lived in a group home. We’d go out to dinner once a month together. They were definitely friends. But I think it started as a buddy program for adults.

Me: Again, creating opportunities for real friendships is a good thing. If everyone involved views it that way and wants to participate – and maintains the option of saying that it feels comfortable or it doesn’t.

Her: You’re helping my brain. 🙂

Me: Good 🙂 Think about meeting a random person and being told they’re your new friend. You may like them; you may not. You may spend a day with them and want to go out and buy a BFF locket OR you may really just feel like they’re not your cup of tea. You have to have that option. If you don’t, you’re not an equal. And that’s not friendship.

Her: Unless you don’t have the skills to say, “You’re not my friend,” or to recognize the imbalance in the friendship.

Me: A) I think that most people have some method of communicating that they’re not comfortable with another person, but it might take some real work on the part of those who know them well to watch for and respect the signals … but even those I know with no language per se tell us pretty clearly when they’re uncomfortable / anxious. B) Agreed that some folks may not be able to discern inequality in a relationship, which is why it’s up to all of us to ensure that it doesn’t exist. It goes both ways.

Sometimes communication support is needed to allow one to be an equal participant, but that support doesn’t negate equality, it ensures it. Does that make sense? It did in my head.

Her: Yup, I see that. Like Howie’s aide. There to facilitate when needed.

Me: Exactly, her presence is what puts him on an equal playing field with his peers.

For the record, while we figure all of this out, I’m watching the Bachelor Finale. The incongruity of these two things is really pretty funny.

Her: Your brain must be so confused.

We then veered off into Katie’s show, ballroom dancing, and the assassination of Malcolm X, as you do.

Lest we leave you hanging, The bachelor is no longer a bachelor, The Bachelorette promises to be an epic clusterf*%k, it seems that no one is entirely certain who was behind the assassination of Malcolm X, and Katie was fabulous in her play. 

 

13 thoughts on “a conversation about disability, equality, and the bachelor finale – this is my life, people

  1. I read this as I buttered toast and rinsed raspberries so forgive me — what do you think about a pairing that starts out as ableism (ew), but (bc our special needs kids are awesome) turns into a genuine connection/friendship?

    The big “April 2” world day is creeping up and I’m thinking of suggestions for my son’s school, while avoiding “blue” and “awareness”. Trying to make it deeper and more meaningful. Something like, “get to know someone new, who might seem to have different interests than you, be open to what you have to offer each other in a genuine way, and see what happens”.

    Fumbling through this along with everyone. 🙂

  2. A thought– Sometimes, I believe we all get mired with words. This is one of those times. If we’re naturally sensitive people who geninely care about people and their feelings, shouldn’t that count. I believe that we should not always have to stop and think before we speak if our heads and our hearts are in the right place.

    Love you,
    Mom

    • The problem for me is twofold. One, I think that we do need to think about what we say. Intent and impact can be very different things, as we discussed very recently regarding the DirecTV commercial. No one is accusing them of setting out wanting to hurt people. But they did. Words are powerful. And while we may have the best of intentions, our words can still hurt. I think it’s incumbent upon us to concern ourselves not just with intent but also with impact.

      But I also think that the systemic context matters.

      Those mentored are protégés, right? This is the definition, according to Miriam Webster, of protégé:

      One who is protected or trained or whose career is furthered by a person of experience, prominence, or influence.

      At ten or twelve or fifteen, which kids are led to believe that their experience is more valid, more useful? Which kids are taught that their voices are more prominent, more influential? Who’s told that they are in need of protection, of guidance of charity?

      Those lessons stick. On both sides. So I think it’s really important that we make the distinction.

      So, yes, there are times when we can get stuck on nuance, but I think that we still owe it to our kids to really think about the impact of a thousand of those nuances a day throughout their lives.

  3. Wow, when I watched the finale, it was intense enough. I am most certain I could not have had that conversation simultaneously. You deserve a rose!

  4. Here’s a thought Jess – not well fleshed out yet – more spur of the moment reading your post. What if in a peer relationship we can see BOTH sides as being the mentor and protege? My neurodiverse son can certainly teach his same age peers about a lot of things – just as his same age peers can teach him. I have some friendships with neurodiverse adults. At times we are simply friends people who enjoy one another – but at times I am intensely aware of them as teachers – mentors for me – on what my son’s experience may be like. And occasionally they ask me to explain neurotypical experience. Peer mentoring does not concern me so long as the message is being clearly sent that both sides are both mentor and protege in various situations. To me that is the essential difference between a “peer mentor” situation and typical “mentorship”.

    • “so long as the message is being clearly sent that both sides are both mentor and protege in various situations”

      in a perfect world, that’s it. absolutely it. the problem that i’ve encountered is that that message is lost within the systemic distinction that NT kids are the mentors and kids with disabilities are the protégés. tutoring situations? totally different – that’s leveraging a specific area of strength and presumably anyone can be either. buddy systems? circles of friends? all of those allow for the natural fluidity that we all have in our relationships, as you said. for me, the most important part IS the room for that fluidity.

  5. Your thinking echoed some of what I try to tell people about foreign service projects — that the missionary zeal attitude of coming in to another country as a savior undermines the ultimate goals.

    Thinking of that analogy helped me to understand what you are saying a bit better, because, in the “buddy” relationship, often, one person is helping the other in many ways. On many fronts it is an unequal relationship. But, that can also be true of the service project, where one person might have the skills and the money. The goal is to also understand the essential capabilities of the other person, their possibility to learn and teach. I can see how the same understanding can be applied to relationship between individuals whose abilities differ.

    I do have to note, though, that not everyone will be capable of this interaction — some buddies won’t be able to see the reciprocal relationship. And, some can learn. So insisting on understanding the reciprocality of the friendship right away might result in fewer buddies (maybe OK?) but also it might result in fewer people having the opportunity to learn.

    Your Katie has grown up in a different reality than you did, and you have a different reality than I do (I have no one in my life who requires me to confront these issues personally).

  6. My head is all woozy now! 🙂 My 12 y/o daughter is a “peer mentor” in what is called the life skills classroom one period a day. She LOVES it and LOVES the friends she’s made in 6th period. She was asked to apply for a peer mentoring spot at the end of 5th grade and in her essay she wrote, “My brother with autism didn’t have anyone in his class who was really his friend and would help him make friends. I don’t want anyone to ever feel the way he did. I want to be a peer mentor so I can show everyone how to be friends with each other.”

    Now, I have this twinge of guilt in my gut because she does mentor. The best way I know to explain it is that she is a living, breathing visual and auditory aid. Every other week she accompanies another student from the class to general ed PE and helps to motivate her to participate. I guess this is where I struggle with “Is it really a bad thing to ‘mentor’?” Sarah’s favorite part of the day is the time she spends with her friends in 6th period, she goes out of her way to talk with them when she sees them in the hallway, she’s already sad and weepy that a few of them will be moving on to the high school next year and she won’t see them every day. BUT, she absolutely glows when she tells me about how she helped S. finish a whole sheet of work and he didn’t get frustrated or yell once. Or when she talked E. through finishing an entire PE activity and made her laugh while she did it. It hurts for me to think what she’s doing, and loving every minute of doing, is somehow hurting the non-typical kiddos she cares about so much.

  7. I totally understand and agree with you. I support programs where NT kids can help facilitate social skills in a structured setting, or tutor in a subject in which they have more knowledge, etc. However, we are currently in the middle of a situation that gives me so much discomfort. We have an annual theater production in town, where child peers are put into mentor and mentee positions. The mentors don’t have disabilities, and the mentees do. I thought that the mentors were more experienced in theater, so there would actually be mentoring in a specific skill going on. My autistic daughter has been in two productions along with NT kids, where disability was never even mentioned – she is a typical theater kid, and I thought it would be great for her to learn more acting skills. However, for this production, which they call the “disability show” (shudder), she was paired with a girl who had never done theater, yet that girl was assigned the mentor position, based solely upon the fact that she is not autistic. So. I spoke to the director and gently suggested that my daughter be the mentor. Ha!

  8. This is a situation that i have struggled with as a teacher for many years. When I was a classroom teacher for students with severe intellectual disabilties we had a “Friends” program at our school. In theory it is a great program because it allows my students with disabilities opportunities to interact with and build relationships with students who are not in their class. The down side was when the program was mismanaged in classrooms. “Friends” were allowed to give instruction and direction to students who were supposed to be their peers. Instead of working together towards a common goal “friends” took more of a teacher’s aide role. This did not help foster peer relationships or true friendships. As I am now an itinerant teacher I see “friends” programs take place in a variety of classrooms. I am glad that many teachers are getting it right. We still have a ways to go but some people are making great strides at creating real opportunities for friendships.

  9. Pingback: UNPLANTING THE SEEDS OF ABLEISM – Autism Mom

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