Mother of two children, social worker, speaker, author, poet
“It never, ever was easy, but it was always, always right.”
Janice conducts workshops for schools, human service organizations, and parent and advocacy groups on the challenges and possibilities facing parents and professionals as they seek to build successful working relationships on behalf of children with disabilities.
Her husband, Richard Feldman, is a former autoworker and longtime community and labor activist. Their daughter, Emma Fialta-Feldman, 23, is studying to be a special education teacher in Boston.
Their son, Micah Fialka-Feldman, 28, has an “intellectual disability” and, in a federal case, fought for his right to live in a dorm while he attended Oakland University. He now works as a peer-to-peer counselor at Syracuse University.
In May 2014, Micah was appointed by President Barack Obama to the President’s Committee for People with Intellectual Disabilities.
Janice talks about Micah’s birth and childhood and how she and her family came to expect that Micah be welcomed as a valued member of the community and school, not in spite of his “disability” but because, like everyone, his experience is unique and essential to the whole.
Early on, we knew that Micah would have all these labels attached to him. “Failure to thrive,” then “developmentally delayed.” When he was born, he had an Apgar score of 4, then 7, I think, which isn’t terribly horrible. But he was rushed to an ICU. The beginning was pretty traumatic for a new mom who was a somewhat competent social worker, working with teen moms. And all of a sudden she has her own child who wasn’t very responsive and was incredibly colicky. I couldn’t stop his crying. He didn’t nurse, which is so primal to who you are as a mother. I was of the feminist generation, so I never thought about bottle feeding my child. It was like a mortal sin, you know? That really shattered my sense of who I am in those early days.
There’s this state of anxiety, What’s going on? Why is this happening? I mean, now looking back, we can understand it more from a physiological perspective. He had low muscle tone, as they say, so that impacted his ability to nurse. But at the time it felt very psychological and personal. I think that in those early days I was in such shock. Any time I leapt to thoughts of the future it was a moment of sheer panic and anxiety. It was doom and gloom and how could this be happening and this isn’t what I want.
Also, I think — this is very controversial to say — but I think eventually I began to feel some shame, you know? Why me? What does this say about me in terms of my identity of who I am, that I couldn’t give birth to a typical child? And shame is a hard one to get over. Now, the good news is that I’ve launched myself far away from that. We move past it. But we’re able to leave it quicker when we can acknowledge it and have people around us who validate and acknowledge it, too.
How did you see yourself getting through this?
I think that eventually I just began to ask for help. And certainly this has been the story of Micah’s life. One of the subtitles of his story could be, “learning to ask for help and reaching out to the community.” When he was about 14 months, we began the path of intervention. Not unlike a lot of parents, we wanted to do everything possible so that he could be “normal.” You want to do everything possible to build on the strengths of the child and intervene so that they can have a fighting chance. I think it comes out of a perspective of, certainly, love, but also this idealized version of what it means to be “normal.” That’s the journey that Micah has taken us on.
Early on he was in a neighborhood program. A friend of ours in the city ran a beautiful school out of her home where she had chickens and a garden. Rather than doing the typical school plays, they enacted Rosa Parks sitting down on the bus. They took turns being Rosa Parks and the police officer. So that was a very enriching environment and fit with our own personal values of social justice. So he was fully included in that setting.
Then he started first grade. He was in what was then called the “opportunity room,” which basically was a room for kids with disabilities, so it was what I would have then called a “self-contained classroom.” They were well-meaning folks, but Micah came home one day and said, “I want to go in the same door as all my other friends.” That really opened up our eyes. And these were the heydays, the mid-80’s, for this whole movement about full inclusion. So we benefited from that and went to a lot of workshops and learned about Circle of Friends, modifications and accommodations and realized that with the right support, Micah could be in general education classes and thrive and be with his peers.
So the concept of being fully included became our goal. It never, ever was easy, but it was always, always right. Not that we didn’t have doubts and worries. Depending on how you look at him, through what lens, you either see ability or you see deficiency. He can’t make change for a dollar, say. He can’t read.
He emailed me…
That’s all technology. He speaks into the software program, and it comes out text.
When Micah was in late elementary, Richie kept saying, “This is what we’ve got to do. We got to work on his computer skill.” Rich pushed that, and that is really what saved Micah or gave him many opportunities, because he could communicate that way.
He may not learn the entire curriculum, but we always tried to focus on two or three elements per unit. So he was always with his peers, which we thought made a whole lot more sense, especially in those early years when language was a bit challenging for him. We never could understand why you would put him in a language-delayed classroom. You’d much rather want him in an environment where there were rich conversations going on.
Here’s an example: Richie was, still is, very active in a lot of political organizations. So Micah always went to political gatherings. When he was eight days old, just out of the NICU [Neonatal Intensive Care Unit], the first thing he did was go to an anti-nuclear rally. (Laughs) Every week, Richie had some place to go to in particular. One day, Richie went up to get Micah from his bedroom and Micah had his stuffed animals and toys in a circle. Richie said, “What are you doing?” Micah said, “I’m playing Meeting.”
So that’s what I mean about opportunities. Recently, I was able to find the psych testing that was done when he was eleven and a half years old, and his IQ was 40. So imagine if we would have believed, if you will, in that number.
But on the other side, it’s easy to lose being the mother and move into being the therapist. It was getting to the point where all this therapy and intervention was really taking my child away from me. So I sort of secretly said, I’m not going to do any of the therapy they tell me for this summer, and I’m just going to go to kids’ music concerts, every single one I can find, and we’re going to have fun together. And that’s the summer I fell back in love with my son, because I stopped being his interventionist and moved more into mothering.
This struggle for inclusion, is it about him as an individual, or is about something larger?
Yes, larger, absolutely. I don’t know how people who weren’t raised in the 60’s do this. [Laughs]. I’m being facetious, but if you talk to other parents, many of them become activists in some way. They begin to see that this is about a social justice issue. I’ve always said that being part of the woman’s movement was so transformative for me, because I learned the personal was political. Disabilities is often seen as a special ed issue rather than a social justice issue. We didn’t see it that way right at the beginning. But over time, because of marvelous people, we learned that Micah has a right; morally, we need to include him as a person.
Who you are today because of Micah?
[Pause] You just went right to my heart. I still struggle with, Am I okay? But he’s taught me, in such a deep way, that there’s so many ways to be in this world. He’s taught me that the only way to get through it is to build a circle of support, to build a community, to ask for help, to invite help. I mean, that’s how we’ve gotten through this. I think the panic in the early years was not only, Am I good enough? It’s, Can I survive this? I feel like, in so many ways, we are very, very blessed with a deep way of being in the world because of him.
We learned that disability is a cultural experience. It’s an ethnicity, if you will. And we didn’t grow up in that world, so we went to disabled activists, and said, “Teach us what we need to know.” So my world is broader and bigger than it ever would have been if Micah was born “typical.” I found a voice. I found my voice. My simple stories over the years have been helpful to other families. That’s a gift that totally surprised me. I’ve learned that part of life is very, very hard. It just is. But to know people who have said no to discrimination, who have said “I belong; I matter; there’s not one way of contributing in this world, I can contribute,” is riches that go beyond gold. As schmaltzy as that might sound, it’s very real.
What do you want teachers to know?
That their greatest gift, their greatest tool is to listen. It requires that teachers come to a total stop to be with us, not leap to immediate fix-it solutions, but try to understand more about the strengths of that family and what that family perceives and needs. Along with that listening comes the validation of our experiences and our feelings. So that’s one thing.
Another is to see the magic in each child. If they can’t see it right away, find other people who will help them see it. Because every kid can do something. Every kid. I say to teachers, Take away the word “expert,” and in its place, put “contributor.” Because everybody can contribute something to understanding that child.
I think that the final thing is to celebrate. Micah’s fourth grade teacher lived across the street and she called late one night and said, “I never call parents this way, but I can tell that all your lights are on, and before I went to bed, I just wanted you to know that Micah counted to 30 today.” And that’s all I needed to know for weeks and weeks! He counted to 30!
What do you imagine Micah will do with his life?
I think he has a role to teach, to share his story, to be kind; his kindness can be a skill. How the world will help him do that and open doors to him still looms large as a worry at times. I think he could work in the university. Be sort of a TA for various classes and tell his story so that people can see that people with these differences can participate in these ways. It’s so clear to me that that could happen because of the way he changes people’s perceptions.
When he was in Syracuse a year ago to do a keynote at this conference, he called me on the fourth day, and he said, “Mom, this is the next door I want to open.”
What do you identify as the Goliath he and we will face?
A misunderstanding of what it means to be human. Over adherence to so-called perfection, of one way of being, one way of thinking. The over infatuation with testing. Not seeing the abilities and opportunities, the gifts.
What do you see as your slingshot?
That metaphor is a hard one, because it reeks of violence. (Laughs)
But it’s just a pebble.
OK, a pebble. Definitely perseverance. Unrelenting perseverance. Not doing it alone, reaching out to others, asking, and inviting people to join us in this, help us. Realistically, learning to have fun in the face of the harder times. That really is important. We can become so serious, so driven, and I’m not saying I’m good at this all the time, but I have learned that I better have fun and my kids better have fun.