I was not sure what to expect that first day I attended a support group. I had never been to anything like it. I am a strong person, or so I tell myself. I pride myself on not complaining, on getting by. But I couldn’t. We couldn’t. Not any longer. Life in our house was ‘extraordinary’, as I recently heard someone call life in her own home with a child with a Foetal Alcohol Spectrum Disorder.
We knew we had to widen our circle. We knew we had to talk to others, to find out more. I know now I was probably in a mild depression.
We needed help.
So we took a leap of faith and went to a support group organized by NOFAS-UK, not knowing what to expect. Nervous.
Little did I know that walking into that room would literally change my life. The people I met, the things I heard profoundly affected the trajectory of our family.
That is in large part due to one woman who was sitting across the room. Maybe I am conflating memories, but I see her, looking over the top of her eyeglasses. Seeing me. Really seeing me.
Everyone was then nameless to me. I had no idea about organisations or networks or the politics of this community. I put out there into that space the fears that I had for our son’s future. Expressing those fears, naming them was hard.
Lucky for me, among so many amazing people in that room (trailblazers in this field, all of them), lucky for me that day there was this one direct, straight-talking woman with eyes that seemed to lock mine to hers. She said what I was not expecting.
She said simply, “Yes, that might happen. Or something worse.”
I was stunned. Mesmerised.
“And if it does,” she continued, “you will come through it. Even if that happens, there is life after it. I know. I have lived it.”
I was an instant Pip Williams fan.
I didn’t know her story then. In fact, I only learned some of it last night at her memorial celebration. But I recognised the voice of truth when I heard it. I knew that here was a strong, salt-of-the earth woman who had been places and who had overcome. Positive and powerful.
She reminded me of my Scottish-American mum. She reminded me of the people I have known throughout my childhood who have had a hell of a life, but who still rise each day to do what good they can in this world. I have some parts of me that are not often obvious here in my England life. But Pip reminded me of home, in all its complexity. In all its vibrance.
I felt drawn to her not because she carried a heavy past but because despite her heavy past she magnificently exuded love.
As people said at her celebration, Pip was fierce in her advocacy for people and causes she cared about.
She’d certainly say it like she saw it. That was hard for some to take, maybe easier for me because, like I said, it reminded me of home. In a country where people often suppress their raw reactions, Pip was disarmingly direct and forthcoming.
But – this was the real unique bit – she’d also reconsider if need be. She’d also reconnect.
She had a vision and she sought allies. She built networks. She watched and she observed like a hawk (I used to joke with her that she missed her real calling in working for MI5). Dyslexic, she forced herself to consume large amounts of material. Non-plussed, she also asked for help – for example, when typing up long comments. (I was supposed to help her write a book she was going to dictate.) To her it was not a sign of weakness but of power to build up a community where each contributes based on their own strengths. That is revolutionary leadership. Yes, she was mesmerising.
She taught me a few things about this FASD world that I consider pivotal.
She stood tall in her insistence that we have to get beyond the stigma. Stigma is stopping society from dealing with this issue. Women who drank (or who are drinking) in pregnancy are not coming forward because they fear their families will be torn apart. She worked with many networks to provide real, comprehensive, joined-up support for women – especially vulnerable women. She advised local, regional and national projects, she sought out best practices through domestic and international networks.
She developed a UK and European Birth Mothers Network to provide a space where those who have given birth to a child with FASD could seek support and understanding. She also was proud of the changes she had helped to bring about where the birth mums were no longer on the side of the field, but integrated. At the tables. In the groups. “We are all parents,” she said.
I had a long chat with her one day about my own presentations on these topics. I told her I felt uncomfortable standing in front of people and declaring my son is adopted because I do not think of him that way and I never introduce him as adopted in any other context. It felt wrong to do so in this context. I asked if she thought it would be misrepresenting things if I don’t say that he is adopted or if I were to wait to say it until at least halfway through the talks. She became animated. It was like this was a breakthrough she had worked for. I hadn’t fully anticipated her enthusiasm. “We are all just parents,” again and again she emphasised that. So yes, now when I give talks, I purposefully leave people wondering at least half-way through the talk. I have felt at times just a fraction of that stigma when people make assumptions as to whether or not I drank in pregnancy. Being under that scrutiny even if only for a short time in a limited situation makes me all the more convinced that birth mums who become advocates are among the strongest people I know.
Pip Williams is at the top of that list. A warrior mum who fought hard and, yes, fiercely for better lives for people who remain voiceless too often.
She highlighted the critical importance of having those voices at the tables, in the planning meetings, where decisions are being made. “Nothing about us without us” was one of her rallying cries. When she saw birth mothers and other stakeholders being side-lined, she called it out.
She believed in the use of technology to unite people for support and for community – the FASD UK Facebook group that she and Maria Catterick started today has more than 2,200 individuals and families linked together. The FASD UK Alliance is a coalition of groups that grew out of that initiative, diverse groups working together for common goals.
Pip has presented at international conferences and in quiet rooms, advised the media and policy makers and held a lost and vulnerable mum’s hand. I stood with her on a stage at BAFTA while she had medicine strapped to her body. She was not someone who fit in any box. She was a force. She was powerful.
But she also was sweet and open. She’d send me photos of men with funky long hairstyles and androgynous clothes to show my gender non-conforming son. She was there with supportive words when a young family member of mine overdosed on heroin. She checked in. She was one of the few people who when she called me ‘luv’ I felt it.
I am going to miss her. Our last day together was in the hospice. She had plans for a birth mother’s retreat/conference that she wanted me to help her make a reality. She was having a rough day. “We’re close enough friends,” she laughed through her illness, “that we can plan and talk through this” (her frequent breaks in the conversation). I have those plans. That conference will happen. I do wish, maybe, that I had given her a longer hug that day. Because while she was planning to be at the conference, I had my suspicions. But she was clear, she wanted to make sure the ‘bus keeps running’ and that was where her energies lay, not in long goodbyes.
Change is coming in this country where more than 40% of women drink alcohol in pregnancy and yet there is little or no diagnosis and support for the more than 6% of people who may have Foetal Alcohol Spectrum Disorders. Make no mistake. When that change comes Pip Williams will have been one of the main reasons why that transformation occurs. She led “at the coalface,” as she used to say. And while she can no longer bash away at the intransigence, those of us she mentored will carry her determination with us when we do break through.
She talked about the importance of keeping the light on so people could find their way if they were lost and seeking. I don’t think Pip realised she was the light for so many of us. Now, the best we can do is pay it forward and carry her dreams with us into the future, into brighter days.
I’m struggling. This post seems inadequate, longer than it should be. This is a personal blog but this loss to our community isn’t about me. I guess I am trying to show in a bumbling way just how profoundly she touched my life. For days in various ways I have been wrestling with how to honour someone who showed me the way past my fears, out of my comfort zone and into a whole new career and mindset. Because that is what she did for me. A direct result of locking eyes with her that day at that support group was my ultimately giving up a 30-year career and responding (with Pip’s “please, please, please” and “yahs!” echoing in my head) to an ad to run the National Organisation for Foetal Alcohol Syndrome-UK. And – because work and life are intertwined in this community – also simultaneously as part of this journey we have been able to better understand our son’s needs, put in place appropriate support, change our own parenting styles. So the crisis our family had been facing – that drove us to that support group – is, for now, a thing of the past. We are doing well. Facing those fears that were holding us back was a key, pivotal step.
And I am but one of thousands whose lives she touched here and around this big, beautiful but imperfect planet.
I guess as simple as it seems and messy and long as this post may be, the best I can do is to give thanks for being able to share some of the journey with Pip. And wherever she is, no doubt she’ll be watching to make sure we all keep it honest and stay true.
I said last night I am not ready to say goodbye. So, I won’t. I’ll just continue to walk on side by side with the other lovely people she bonded together (those I know and those I don’t yet know) as together we journey further down the road. Where I know she is keeping the light on for us all. Shining fiercely. Showing us the way.
For a small insight into her thoughts on how to improve things, please see Pip’s May 2018 statement in Parliament here, starting on page 13 for her outline of what needs to be done to better support women and to bring about change in the UK.
Pip Williams was born 23 August 1963 and died 1 February 2019. A celebration of her life was held 26 April 2019. This was written the morning after the celebration.