For the first twenty-five years of her life, Emily Grodin’s parents tried to communicate with her through her autism, while advocating for her just treatment by society. Nothing seemed to work—until, miraculously, something did.
Emily and her mother, Valerie Gilpeer, embarked on a highly unusual memoir, I Have Been Buried Under Years of Dust (William Morrow, $25.99) in which each tells the story from her own unique perspective. Fiction Editor Yona Zeldis McDonough spoke to Gilpeer and Grodin about their remarkable journey, one that brought them closer than they ever imagined was possible.
YZM: You’ve said that you became a disability rights attorney after a number of years practicing civil litigation that focused on financial issues. Can you talk about what prompted the change and how it has affected your life?
VG: I changed my focus when Emily was in the 3rd grade. By that time, we had been through several battles with our school district and I was beginning to see just how widespread the failure to provide the appropriate levels of education to the disabled was. I was also increasingly aware that there was a lot of misinformation being offered to support families. When I was offered the opportunity to join the office of most preeminent special education lawyer in Southern California, I welcomed the opportunity.
YZM: How — if at all — has the conversation around autism changed in the last 25 years?
VG: Awareness has increased, but acceptance in the mainstream community is still very slow. No one wants to be simply tolerated. Full acceptance remains the greatest challenge, particularly for those who have expressive language challenges.
YZM: In your Jewish family, you were completely overshadowed by your brother’s brilliance, and “everyone bowed down to him” whereas you were only expected to “marry well.” How did you react to this expectation?
VG: I pretty well ignored that particular “expectation”…at least initially. I did marry a wonderful man. Certainly, education was valued in my family, and going to college was always expected. But then I just kept going, to graduate school, then law school. I think they were scratching their heads as to my enthusiasm for higher education, but it was not discouraged. My father was particularly proud of my accomplishments.
YZM: What was it like working on this book with Emily?
VG: What could be better? Sharing this experience with my daughter who less than four years ago was not able to share these deep thoughts validated my long held belief that there was so much more to Emily than had ever been acknowledged by any teacher, family member or friend. Emily had considerable behavioral challenges secondary to her autism and clearly related to her language compromises.
She had endless speech therapy but even after 25 years was minimally speaking. Following a particularly challenging behavioral incident while she was residing at UCLA, her father and I knew we had to do something. We tried facilitated communication, but for several months we saw no results. After a challenging trip to Ireland where Emily was faced with so many challenges and had a particularly difficult meltdown, she decided that she had to begin to communicate with us and with the world. When we returned from Ireland, she had her breakthrough. It only happened when she was ready to make it happen. Writing this book together has been an extraordinary experience, given the life we had all led prior to her breakthrough.
YZM: You spent many years communicating only minimally before having a breakthrough. Why do you think you were ready at that moment and not before?
EG: I think it was both timing and method. I think my parents could see that I was under extreme stress having returned home from Ireland. The trip home had left my head filled with new sights and places and feelings, good and bad. I had just had a really big moment, one of the hardest we endured. The method of typing was the level of communication that I could access during that critical time. It was like I knew that my parents needed to hear from me. I needed to hear from me too.
YZM: : You’ve become a poet; why is poetry your chosen means of expression? What do poems say or do that prose doesn’t or can’t?
EG: I don’t know that I have been asked that question in that way. I think a lot of the reason I am drawn to poetry is how much freedom there is. I can better paint some stories with imagery and detailed words than by just telling it. But also poetry has let me work through parts of my life. It allows me close the door on certain things. It allows me to process.
As far as prose not being enough. Poetry is not better or worse, just different. Much of my experience has been different from most. Poetry can be chaotic or calm, whatever I need it to be.
YZM: You’ve written that one of your goals is to explore your Jewish faith in greater depth. Can you talk about why, and how you see yourself doing this?
EG: It’s really just about knowing who I am. I think that for so long I just was what I was told I was. I will always be Jewish but I also got to pick being strong, being a writer, being an advocate. We are made up of what we already are combined with what we choose. I want to learn about myself of course. Right now I don’t know how I would go about it. Maybe just my own studies, but I prefer structured learning.
YZM: If you could condense your experience of being autistic to three things, what would they be? What do you want to tell people about autism that they might not know?
EG: Do you know the whole idea that some things will grow only to the size of their environment? Please do not constrict autistic people. We can only grow as much as the environment around us. That would be the first.
The second would be that life is just hard when we are not in control. That goes for everyone, right? I mean to be an adult and not dictate what your day looks like, that is hard. I think that when I am in control of my life, that is peace.
Lastly, I have to say that non-speaking doesn’t mean non-thinking. I have said it before and will continue to. If you know or love someone non-speaking, help them find their voice.
Maybe it’s not the best for people to get stuck thinking about autism in one way. I would like people to know that we have a lot of work to do in inclusion. Families should not have to fight as hard as we did. But I hope that our fight helps others in their own journey.