in the doing

Be the change you want to see in the world.


When I was in college, I had a number of friends who had grown up in activist households. They were organizers – they marched and sat-in and loved-in and held candle-light vigils when they saw injustice. I found them fascinating.

Like so many other things in college, I tried their brand of activism on for size. After an awful incident in which racial epithets had been painted on a fellow student’s dorm room door, I joined my friends and marched across campus. I raised my voice along with the crowd – “Hey Hey! Ho Ho! Racism has got to go!”

I was invigorated, but it just didn’t feel natural to me. As much as I whole-heartedly believed in what I was shouting, I wasn’t entirely sure who I was shouting it at. I was grateful to the marchers for doing what they were doing – there was strength and power created by coalescing with like minded folks; but I knew that it just wasn’t me.

During our senior year, my friends and I compared notes as we sought to start our careers. Many of them railed against the lack of women in the upper echelons of the workforce. They raised angry fists at what they saw as the systematic discrimination that served to keep the generation-old glass ceiling in place. Many of them joined advocacy organizations that worked to enforce fair employment practices. Again, I was grateful for the vital work they were doing, but still – I knew it wasn’t me.

I went to work for an old school Wall Street investment bank. During a final interview with the head of the trading desk, he sighed deeply, tugged at his hair and said, “This used to be done through the old boys’ network.” I stuttered, “Well, yes, but I’m obviously hoping that’s changing a bit.”

I decided that my very presence would be my activism. I would change the environment – make it friendlier to women – simply by becoming a part of it.

My friends teased me for bowing to the man. We laughed that I had sold my soul to the devil while they worked to save the world. I never minded. I was thrilled that my friends could do what they did. And I knew in my gut that I was making a difference in my own way. Over time, I mentored young women who joined the ranks behind me.

Years later, I had a long conversation with a friend who was doing some soul searching about her role in the world. I told her that I had come to believe that real change has got to come from within. That while external pressure is often necessary to get the ball rolling, I feel that true systemic change has got to have the buy-in of a group’s members in order to be effective. Particularly when it’s the heart and the mind of an organization – or school or community or town or nation – that you are trying to change. It has to be internal to be meaningful.

People often ask me why I continue to stick with Autism Speaks even though I often find myself at odds with their direction. My answer is that they are big. And powerful. And they have one hell of a platform. Whether I like it or not, they are the only voice of autism that millions of people hear. They’re not about to stop speaking. So I want to be a part of steering that voice. If I’m not happy with what they are doing, I feel like I have a responsibility to help make it better. Rather than saying, “Autism Speaks does not speak for me,” I choose to talk to them about how they CAN speak for me.

This week is Inclusive Schools Week. Along with the Inclusion Committee and a host of volunteers, I’ve been scrambling to help pull off all of the events that we have planned – from the appreciation luncheon for 28 aides to a community wide screening of Including Samuel to a pizza and bake sale to raise funds for the materials that the school has requested to support inclusion. I’ve been burning the candle at both ends and I’m exhausted. But I’m also proud of what our fledgling group has accomplished.

I had the rare privilege of dropping the girls off at school on Tuesday morning. And I was blown away by what I saw there. The school-wide art project is complete and on display. It is breathtaking. Next to the work is our fabulous art teacher’s explanation of how it so beautifully relates to the week:

Inclusion week is one week during the year when we celebrate something we do every day: including everyone. In art class, we have had many discussions about what inclusion has looked like in society at large and what it looks like here at our school.

For our art project, we created images using line drawings with partners. The process was that one artist created a unique linear pattern and then taught their partner how to draw it on their side of their “pair square.” Once completed, we hung them up so that each student’s corners matched up with others to create circular design patterns in one unified composition. Each child had the opportunity to collaborate with another child and learned how to work together to create a piece of art.

The circles are also known as Mandalas, which means “circle” or “the essence of completion” in Sanskrit. The symbol of a circle represents the circle of life, balance, order, harmony and unity.

Our Mandalas have a beautiful visual impact, however the symbolism is what I feel resonates with all of us. We all encompass beauty and knowledge. Ultimately, this project teaches us that when we work together and teach one another, the true beauty of inclusion is realized. When each person’s individuality is celebrated, recognized, and included, the circle is complete.

Yes, she is the BEST ART TEACHER in the history of the world. But the art was just the beginning.

A teacher came up to me in the hallway to tell me about her plans for the faculty meeting later that day. Every faculty meeting now has fifteen minutes dedicated to inclusion. Every meeting. Throughout the year, the faculty will discuss what full inclusion means and talk about how to support it. Our dedicated and passionate inclusion specialist has surveyed the staff to find out what they currently do, what they’d like to do and where they need support. The teachers have shared their best practices to help mentor one another.

So this teacher – one of the beautiful souls helping to lead the charge – told me of her plan to hand out cards to each teacher at the meeting that said, “Inclusion means …” She would get them thinking and talking about why this matters so much to THEM, just as they spoke to the children about why it should matter to them.

In every classroom, the teachers are reading and discussing books about understanding and celebrating human differences. The librarian is doing the same. And the kids are TALKING. Katie came home last night abuzz. “Mama, we learned all about Including Samuel from Mr M. I gotta tell you, Mama, I think Samuel sounds like a really fun kid. Mr M told us about the ‘zoom’ button on his wheelchair and I hate to say it, but I think that Samuel might be just a little bit of a rascal.”

Every day, I’ve sent out a challenge to parents. Monday’s was to find someone they’d never talked to before and to introduce themselves at pick-up time. Ask about their kids. Find out where they grew up. Ask if they’re going to the movie. And then – here’s the kicker – talk to their children about the rewards of stepping outside their own circles. Talk to them about how by pushing past their comfort zone, they can meet some pretty neat people.

Through the haze of exhaustion, I’ve been exhilarated.

But there are those who will say – as one parent did yesterday – It’s not enough. You’re going about it the wrong way. You’re pounding your chest about all your efforts but discrimination is still happening.

I measured my response carefully and finally said the following.

If I gave you or anyone else the impression that we are celebrating a mission accomplished, I apologize. By no means do I think that our work is done. Quite the opposite – I am doing all of this precisely because I see just how much there is yet to do.

I began this effort because I watched my little girl with autism getting teased at a birthday party for being different. I pushed on when a schoolmate asked my older daughter about her sister being ‘so dumb.’ I couldn’t stand by and watch it happen.

I appealed to the community for help. 30 plus people stepped forward wanting to be part of figuring out how to make our school, our community and our town more welcoming, more compassionate and more understanding.

Inclusive Schools Week was no more than a convenient starting point. We viewed it as a great platform to BEGIN the conversation. We met and brainstormed and came up with as many actionable ideas as we had the manpower to execute. Much of what we came up with was for ISW specifically and much more was to be part of our ongoing efforts throughout the year.

I then went through – yet again – the specifics of what we are doing and will continue to do throughout the year. And I ended with the following.

There’s much more, but I won’t rattle on as you can find it all in my previous e-mails.

And yes, we are also working hard to bring attention to the work we are doing. If that comes off as smug, I assure you that’s not the intention. Rather, my intention is to shine a light on the work that needs to be done – to declare our subscription to the ideal that each and every member of our community is to be valued, celebrated and included. It’s an ideal – a worthy goal that every moment’s work this week (and all the efforts going forward) are about and one that needs the entire school’s participation if it is to have a meaningful effect. If we’re only talking to ourselves, we are preaching to the choir.

I hope this helps to explain what we are trying to do.

It is a work in progress. I’m no expert on any of this – I’m just a parent who is trying to make things better for all of our children. I am, like everyone else on the committee, trying to feel my way through and make the most impact that I can. No one should ever be teased – about their (clothing, their heritage), their neurological function or anything else. And that’s what fuels us.

I am grateful for constructive suggestions about how we can do better. I hope that we can work together to make the process as productive and meaningful as it can possibly be.

There are times when we all want to swing a bat. When we see something that doesn’t feel right or when our child hurts and we want someone else to feel our pain. I understand that feeling. I’ve been there. And I’ve nearly lost it. When Mama Bear wakes up, she wants to protect her cubs at all cost.

But I’ve shouldered my bat because I’ve found that I get a lot more done when I extend a hand instead – when I look at what needs to be done and I do it. I don’t always have the time or the energy to do it myself, so I find the people who do and I ask how I can support them. And when I think they’re screwing it up, I offer ideas as to how they might do it differently.

It’s tough to drop the bat, but it’s tougher to actually talk to anyone while you’re swinging it.

If you want to see something change, be a part of it. Be the change you wish to see in the world. And little by little, step by step, we’ll get somewhere. But please be patient, it may take a little longer than two months.

29 thoughts on “in the doing

  1. Wow–I think that all you are doing is wonderful! I would say that I wish there was notice of inclusion week in my community but I guess it would be better to say that I should have made notice of it! You bring up a lot of good stuff here.

  2. I agree. It’s easier to react then to act. The problem is, I’m not sure how. I envy your ability to teach and use negative situations as an opportunity. I don’t have the words, I don’t have the age appropriate knowledge, i’m afraid I won’t have the patience. I know kids are kids, but if I patiently explain something, and they come back with a smart remark or a bored roll of the eyes….well….I could see me sinking to their level with a scathing look or comment.
    Was there a primary resource you used to help you find the words?

    • jacquie – it’s not easy and it will always be a work in progress. i’d love to say i never roll my eyes or come up with sarcastic retorts, but i’d be lying. what i do try to do is to step back and breathe before responding to a situation. i find that i very often wind up dramatically tempering my initial reaction after some thought and distance.

      these are emotional issues to which it is only natural to react passionately, but our visceral response may not be the one that actually has the ability to change anyone’s thinking. in fact, i have found that responding with anger usually serves to strengthen other people’s convictions rather than make them question their assumptions.

      i didn’t use a resource. as much as i wish i had a flip chart to use in these situations, i find that the words that work best are the ones that are from the heart. they don’t have to be pretty, they just have to be real.

  3. Your philosophy is right on the mark and it requires leaders like you to articulate the mission. As you so aptly state, it also requires all to participate and make change from within.
    I absolutely love the, “it’s tough to drop the bat, but it’s tougher to actually talk to anyone while you’re swinging it.” All too often people like to shout at others but can’t hear any answers while their mouths are going.
    You make a parent so very proud to be your parent.
    You will also make your children so proud to be your children.
    Love you,

  4. Reminds me of the story of the boy throwing starfish back into the ocean after a story dumped thousands onto the shore. When asked why he was wasting his time because he couldn’t possibly save them all and make a difference, the boy said, “I made a difference to this one.”

  5. Sometimes history and events call for anger in activism. Sometimes anger forces people to finally open their eyes and recognize a problem. Sometimes people feel more righteous when they’re angry. Sometimes they feel like they’re getting the message out if they’re shouting loudly.

    I prefer Rosa Parks, MLK, and Ghandi. One pebble, one ripple, one person at a time. Tanya at Teen Autism. You, my friend. Drama Mama. You are all doing it. Not with bats or bricks. Not with shouts or slurs. But not any less committed. Not any less active. And certainly, your smiles are more effective than any bat ever was.

    You got it, girl, in spades.

  6. YES. Y. E. S. I agree and this is exactly my phillosiphy as well. Mistakes are an opportunity! You say it more eloqently than I, but that’s my message. You inspire me and I am so grateful. You are something special, Jess.

  7. You should be so proud of yourself – for all you’ve accomplished and all you plan to. I’m proud. I’m passing this post on to all the moms and dads in my school district who are trying to make a difference. Well done.

    • as much as i dislike autism speaks (and how they spend their money in general as well as their outrageous salaries), i dislike even more “age of autism”. the path they are taking is harmful for society to say the least. as a matter of fact, i’m not sure why they don’t support autism speaks.

  8. Pingback: inclusion committee year two -and the beat goes on « a diary of a mom

  9. hi. im practically speechless. you are a hero. anyway, i too would like to effect change from within. i am now attending pfo/bd of ed/septa meetings. things are slowly changing- but i have a very difficult time expressing myself without anger or tears. i am able to do it sometimes, but barely.

    i would like to get inclusion week in my district. i would like to shoulder my bat and get people on a committee to help. but i really have no idea how. 😦 can you provide a little more information about how exactly you asked for help, how you got those community members to join you, how exactly you were able to get inclusion week in your school?

  10. thanks so much for the links. i have cut and pasted and will print and digest. i did find the committee one (2nd link) earlier this evening which got my wheels turning. but the first link seems to have you in a place that is well on the way. you addressed people as “the liaison to the special education advisory council:. what exactly is that and how did you become the liaison? can you please start from the very beginning for me?

    i really don’t know how to approach my pfo boards as one person right now. i do attend the council of school meetings where the boards of each school are present, in addition to both of my daughters schools pfo meetings, and septa, and bd of ed. and i’m on site based mgt team at my disabled daughters school. i have piped up about creating inclusion opportunities at each (except board of ed as of right now lol). people seem receptive. i need a little focus i think and i would think an inclusion committee sounds great, but i am not so eloquent or positive or cool or popular as you are! i don’t know how to get a committee going or who would put me on it lol! i prefer to be a little out of the limelight but will do whatever it takes. first, our pfos have minimal attendance (7 last time) and i could never get people to sign up like you did. second, even if they were crowded, i suspect i would not be able to have it be the “cool” thing. i have previously swung a bat a little so i think it is going to be tough..right now i seem to have the ear of at least one very supportive bd of ed person, and septa, as well as cooperation and interest from our pupil personnel director.

    so, how do you suggest i do this, where can i go from here, or can you just back up one step from your first post and describe this liaison business. i think the time is perfect for my district but i am no leader. suggestions??

    thank you ❤

    • my suggestion would be to start w your septa – i would approach them with the idea of having a parent liaison in each school in the district (and one for whose kids are in out-placements as well!). it’s a great way to help gather volunteers when needed (and as a bd member of our organization i can tell you they are ALWAYS needed) as well as to grow membership and help raise the profile of the group overall. you can then volunteer to be the liaison, or if you really don’t want to be visible at all you could offer to help find someone to help fill the role in your school.

      from there, you’ve got some leverage because there you’re acting in an official role. you (or whomever is acting as the liaison) could then approach the pfo at the school (along with the principal and anyone who may have a leadership role in spec ed) to talk about participating in ISW, starting a committee, sponsoring inclusion awareness and education activities etc .. whatever you think would work best within the culture of the school and community. once you get to that point i’d be happy to forward you some of the ideas that came out of our town’s ISW brainstorming.

      • sorry to keep bothering you but this is so important and the timing is now for me. do you mean a liaison between septa and the school? currently we have a sign up sheet for septa members to represent/attend each school’s pfo meetings (and bd of ed and council). i have signed up for my daughters two schools. that means i attend the pfos and provide summaries of what occurred at those meetings. the meetings are basically to discuss fundraisers. off topic can be discouraged. i do suggest inclusion opportunities and the administration is receptive. once i mentioned an issue that bothers me about best buddies (its purpose is presented as a place to make friends, no mention of db) and i was told that this was not the forum, etc etc. septa is a bit more helpful but the bd of septa likes that the best buddies mission is hidden so as not to pinpoint disabled kds and to get more gen ed kids. this is a separate issue that i am trying to address.

        the bds of pfos and septa do not seem to be interested in any change at all. the meetings are attended mostly by the bds and very few others, and a few administrators. i do have more of a voice with the bd of ed/admin. than i do with the parents, sadly. but i still do not know where exactly to go from here. the site based mgt team in my (disabled) daughters school just shelved the current project and asked for ideas for new project. the asst principal suggested i be “spec ed champion”..i would like the inclusion to start in the high school where she is, so this may be a place to start. maybe student council would be more receptive than the parents, i do see students more open.

        any ideas?

      • there’s really no way for me to answer this from afar. every school, every community has its own culture and each of them demands a different approach. in my experience, it’s always been about finding a champion somewhere who wants to help. it may be an art teacher, it may be a guidance counselor, it may be a parent leader of the pfo. it may even be a kid on student counsel who would love to get something going. keep at it, keep talking about it. you’ll find someone who can help you ignite the spark.

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