Sunday, October 19, 2014

On Boundaries, Privacy, Activism and Family (My Son is Not An Activist)

"When an man lies, he murders a part of the world" 
                                                                       - Merlin
                                                                                                  from the Movie Excalibur

Something negative has been floating around awhile now. A festering, pustulant bit of gossip that finally spewed out into the open during an advocacy related phone conversation I was having last month. I'd heard hints about it, but it had never been said to my face. The person on the phone decided to blurt it out."...since you are shut in, you know a recluse...I mean you only want to meet on the phone." Out it oozed all over the Verizon fiber optic cables. The person continued speaking but I was stuck in that moment.

Don't presume to call me a shut in because I think my son is a higher priority than your personal convenience or organizational agenda. That nasty little attempt at needling me into reacting to prove I was not whatever negative adjective was being ascribed to me shut down any further volunteer efforts from me for that individual. But it also highlighted something I've needed to say for a very long time.

Let me be clear. In the hierarchy of priorities my neurodivergent son comes before any legislative advocacy. He comes before any nonprofit organization. He comes before meeting the President of the United States. If I need to be somewhere and Mu isn't feeling it I reschedule. I will not drag him to any protest, rally, workshop, meeting he doesn't wish to go to. Nor do I expect him to sit through some activity he doesn't want to sit through. I only have so much life left and the lion's share of the time I have belongs to my autistic son, his father, and his sister. My husband and I made a joint decision at very high cost to ourselves that I would cease working when we realized Mu's sleep cycle and school troubles were not going to simply end. What is more important is something I suspected but now know for certain: Mustafa is not interested in activism.  Knowing that, I have spent the past three months in particular changing what he does  and scheduling things related to activism based on his indications of what he wants to do. Because he wants to have an autonomous life, and his life should not involve being forced to be a sidekick in my activism.

Mu in his 'fro phase with his favorite t-shirt at his computer
in our old house. the shirt is white with the words "Stand Against
Restraints and Seclusion by Teachers" t-shirt by autistic
activist Lydia Brown. Photo ©Kerima Cevik
See my life in advocacy is and was always meant to be an ally's life. I was meant to be my son's sidekick. That concept expanded when I realized the only true way of making my son's life better was to make life better for all of his peers as well. So when a member of Mu's neurotribe speaks, I shut up. If I want to say something and a neurodivergent person has already said it I amplify and signal boost, step out of the spotlight and work to place the light on them. My activism is not for self promotion. It is for Mu. So if he doesn't want to go to D.C./Annapolis/ Baltimore/UMD, or wherever, people and the organizations they represent either Skype a meeting, call me or do without me. That is the way it is. Anyone wanting any contribution from me should respect that boundary. Once crossed I will shut them down and drop them like a bad habit. That applies regardless of their station in life or how famous they are.

On gossip. We are all too old for this. When someone gossips consider two things that we were all taught as children. First consider that if that person is saying something nasty about me, they will also say something nasty about you the minute your back is turned. Second, a bit of gossip is a thing that functions very much as it does in the children's game "gossip". It gets more inaccurate each time it is repeated. So not repeating negative things helps eradicate an insidious ever expanding lie that is a threat to unity in activist communities. I am not sure why how I live my life is of any concern to anyone. I am a bit shocked that others would see this as an important enough topic to use it to disparage me. I guess I need to remind them that I am simply a parent, activist and blogger. And if they miss the point that this is about the human rights of our children, and not about me, let me hammer that home.

I am part of  the true Autism Wars, a larger series of wars for the human rights of our children.  These battles are being waged for equality expressed in acceptance, representation, and full inclusion in society through accommodation and supports for neurodivergent people throughout their lives. I want to see the day when the standard for educating all children is true inclusion regardless of degree of disability, support and accommodation needs. I want to see the day when my son's divergence doesn't matter.That is what this is about and what I am about as an activist. My son is important. My sitting on a board of directors is not. My son's peers are important. My speaking to adoring crowds is not. Those activists who fight for their neurotribe members matter. My job is not to photo op with them it is to have their backs. I don't keep track of what I do. I don't have someone who chronicles the speeches, good deeds, printed words and further charities of Kerima. So I'm not certain I'll be invited to speak at your next conference. If you get that about me, we'll get along fine.

I also need to remind people that activism can easily consume a person's life. I cannot allow it to do so to mine, because that would steal my son's birthright to his mother's time to love and support him. I must always fulfill my obligations as a wife and mother and friend first. If you didn't get all that let me sum up. 1. My son comes first. Respect that or don't engage me. 2. He is the reason I blog and I am an activist. 3. Trash me to hell and back it only diminishes you. 4. If I have an obligation, event, or commitment and my son has an issue I don't go. We have learned to be flexible because our son has multiple disabilities and if he is reticent to go it means he's trying to tell us he's not feeling well or something is amiss. 5. It doesn't become us to propagate gossip or make presumptions about others. We need every member of this community to work together and this behavior is deceitful and destructive.

Based on years of attempting to work with organizations who don't respect what I'm about, and who my son and I are, I am seriously considering stepping back further.



  1. Excellent. Well said. 100% correct.

    Not autism (specifically) related, but honoring our kids related: My son's school was part of a parade this month. We've done it for the last couple of years. We were going to do it this year - we showed up and helped decorate the float. About 5 minutes before the parade was to start, he asked to go home. I was surprised, because I know he enjoyed it in the past, so I confirmed with him that it was what he really wanted. Then we left. No big deal. I see no reason to make my child do something he just doesn't have the spoons to do. And if we're stuck in a situation where we have to push through it, I'll do my best to cushion whatever I can so he doesn't get overwhelmed. It's just not about us or anyone else.

    Huge hugs and support to you!

  2. I am so bothered that someone not only thought, but dared to say such a ridiculous thing. You are 100% in the right. Family first ALWAYS. And second. And third. That is the way it SHOULD be prioritized. That doesn't mean that there's no value to your numerous contributions as an activist, and it is awful that it would be seen as such. Balance is important, and those who don't comprehend that are likely to "burn out" over time. Please do not be dissuaded by naysayers and gossipmongers; you are doing things exactly the way that they need to be done. Period.

    Major hugs, and solidarity.

  3. I totally agree, Kerima! I wish my parents had felt the same about my sister and me. They weren't activists, but they — especially our mother — insisted on dragging us to numerous events where we were bored out of our minds, and in my case sensory overwhelmed constantly fatigued. And when either of us complained, or I had a meltdown, we were given all sorts of guilt trips and told what bad children we were. I think you're an awesome mom. Thanks for writing this blog and setting a good example for other parents of Autistic kids.