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Volume 52 Number 3 Summer 2019
Edited by Tehseen Noorani, University of Durham
Written by Tehseen Noorani, University of Durham
Editor's note: In this interview Allison Vitalis introduces Postcode Parents, a volunteer-led support group based in Hackney, London. Postcode Parents was set up in 2015 to support the psychological and practical well-being of bereaved families who have lost loved ones to knife crime. Through the group, family members take workshops, share experiences and comfort one another through the grieving process. They can be found at
TN: How did you get involved in Postcode Parents (PP)?
AV: I work for an organization called Hackney Play Streets, where residents close off their streets to through traffic for a few hours weekly or monthly, so that children can play out more safely and neighbors come together – making streets friendlier for all. On my very first day at work I had to meet PP, who were interested in closing a street as part of their knife crime awareness fun day. I attended the group to discuss what my organization could do for them, and then decided to stay for the rest of the session. I didn’t contribute but listened and was moved by their stories. It was heartbreaking to see them crying over the traumatic loss of a child to knife crime, but very moving to see how compassionate they were and how they all provided support to each other. I offered to help as a volunteer, including searching for funding as I had had previous experience working in the finance sector and in a charity. I began to attend PP regularly. In February 2017 my nephew was stabbed 6 times in an unprovoked knife attack. Thankfully he survived. PP became my support system during this time. I then made it my duty to dedicate as much time as I could to assist with the group.
TN: What was the background to the setting up of PP?
AV: Charlie Burns was tragically killed in a knife attack in London on August 18, 2014, one week before he would have turned 20. Charlie had just become a father and was training to be a plumber. In the aftermath of his death his mother Keeley Burns, with the support and guidance of family and Charlie’s friends, set up The Charlie Burns Foundation, a group established to advocate against, and raise awareness of, knife crime and serious youth violence. The Charlie Burns Foundation set up Postcode Parents as a support group for those bereaved through knife crime by providing a time and a space to talk for those who had similar experiences of trauma. UK postcodes are akin to US ZIP codes, and it is said that youth gangs in London are territorially divided and defined by their postcodes. Postcode Parents derived its name from this, though it is not restricted to one postcode.
In the current criminal justice and judicial systems, sudden bereavement can leave families feeling powerless and marginalized. Victims do not have a clear roadmap in the aftermath of a homicide. Statutory and voluntary services are often experienced as individualizing and limited, only a partial response to the complexity of their trauma and grief. Counselling is also offered in the early stages to those bereaved, but immediate therapy is often not what families need – usually families are consumed with finding the perpetrators of their child's stabbing. Where perpetrators are caught, families are unable to process what they are going through until after sentencing, and yet a victim's journey through the criminal justice system suppresses the grieving process. For example, in order to attend court, the parents/family are not permitted to show any emotion as not to influence the jury. Once this period of time is over, they are expected to just assume a ‘normal’ life.
TN: How does PP run?
AV: With the help of a grant received in 2017, PP currently meets every two weeks, bringing in a facilitator every other meeting to run a workshop on a topic chosen by attendees - such as yoga, first aid or massage therapy. Workshop topics are selected according to the needs and themes that come up in meetings. In meetings where there is a facilitator, the group takes 30 minutes prior to the workshop to address any concerns (if any) and 15 minutes at the end of the workshop to discuss the workshop and what attendees learned from it, time permitting.
We are in the process of looking for a secure space and funding to continue running PP and are also in the process of arranging a referral system between PP and existing infrastructures of support for victims of crime. However, as a newly formed CIO, I have found it very challenging to make applications for funding due to the specifications in applications and the available pots are restricted in value due to the size of the organization.
TN: What is a typical meeting like?
AV: Chairs are laid out in a semi-circle. The meetings are facilitated by the founder Keeley Burns and me. My role as the facilitator of the project is to ensure the room is set up with refreshments available and to greet the users. I would assume the position as an observer. We do not have explicit ground-rules but there are unspoken rules as the group shows respect and values each other’s journey and experiences.
Each session is different. There are times when one of the users has experienced a difficult time during that week and share their experience with the group. There is a tremendous amount of care and compassion. On other occasions the group is full laughter and it’s very satisfying to see everyone relax, if only for a moment.
Sometimes certain individuals will dominate the session while others do not speak up as much, something I try to mitigate by asking everyone about their well-being at the start of the session to get everyone speaking. I have never been to a session where everyone does not participate in a conversation. This may be down to the number of users that attend and the level of understanding that they have for each other as they have similar experiences.
TN: Who attends?
AV: In the support group meetings, the majority are females between the ages of 45 and 65. Workshops tend to attract male and female adults from diverse cultural backgrounds. One family sometimes brings their 12-year-old daughter, though in general I have found that once a parent attends a session, their child is more apprehensive to attend, assuming the group is for their parent.
New users tend to be introduced to the group by existing members, or through our flyer distributed in the local area. We have regular users who attend nearly every session, but also those who cannot attend due to commitments such as children or work. Not everyone who has attended has lost a child to knife crime. We have attendees whose family members were perpetrators of gun and knife crime attend a few times, as well as parents who are concerned with their children’s behavior and come to the group to get advice and support. To this end, we have run workshops on youth culture and gang culture.
Those who need support but cannot attend sessions are able to speak on the phone with me or I arrange a suitable time to meet with them. In these one-to-one contexts, parents often disclose sensitive information that they might not feel comfortable to disclose in the group. This might be because they feel I have the answers so, depending on what is discussed, I usually try to encourage that they share it with the group or signpost them to an organization that are able to support them further. Some fear to disclose their information in the group as they are either a perpetrator's family or their child had gang affiliation and they fear being judged. I never dismiss them but do sometimes remind them what the group is for and that, no matter what the circumstance, they are all grieving parents who need support.
TN: What themes emerge in the conversations?
AV: Discussion points emerge around the intricacies and failures of the justice system and the (lack of) support received, which tends to be different from person to person. Attendees also discuss well-being strategies for oneself and for loved ones, counselling waiting lists, medication, hospital and doctors’ appointments, and the lack of support for their children who have lost a sibling. Attendees often discuss the questionable value of the therapies offered, which are based on methods and practices that are not always the right fit for parents bereaved through knife crime. Most parents in PP who have had therapy state that it's not for them and that they do not like it. They were not given a choice of therapy but treatments that were said to be the best for them.
For those who have not yet received justice, their focus is on doing all they can to get wanted posters out and catching those responsible for the death of their child. Many parents want to set up their own organizations in their children’s names to do things within the community they live in to help with the youth to teach the of the implications of knife crime.
The bereaved parents share how they cope in different ways - some live in homes with images and reminders of their lost child everywhere whilst others have removed every reminder. They also discuss their health problems, which for some are very extensive and concerning. A couple of parents have put on excessive weight due to medication they are taking for ailments in the aftermath of losing their child. One parent carries around a carrier bag full of medication that she has to take daily (for blood pressure, water retention, water in the brain, knee pain and shoulder pain).
Attendees who are not bereaved through knife crime bring up their concerns with their children’s behavior at home/school, including not knowing how to address concerns over their child carrying a knife, and/or not listening to their parent.
TN: Does the group engage in more overtly political conversations and activities?
AV: Attendees compare their journey through the justice system, which from user to user is very different. They are very sensitive about the compensation scheme which is a subject touched upon but never spoken in the group in any depth - though I have had private disclosures from users. The compensation scheme seems to be a lottery system which victimizes and stigmatizes these families based on their backgrounds and child’s involvements with the police or gangs.
Certain users of the group are invited to attend discussions at City Hall and the Houses of Parliament to voice their views on policy and practices. Attendees usually agree that the government doesn't care much about their youth, aren't doing enough to prevent knife crime, and feel the community are left to be responsible for the prevention of knife crime.
When another knife crime is announced in the media, the mood of the group is very solemn and the discussion is usually around the media story, which is usually very racialized - if it is a black youth the media tends to use negative descriptions such 'thug' or gang member' whereas with white youth use headlines that paint a positive picture, such as of a ‘star student’. Discussion of stop and search, curfews and youth culture often occur. We talk about the incidence of knife crime, including who and where is being affected. These conversations usually end with reasons why youth are committing knife crime and what the group thinks can be done to reduce this. The group are divided on their views of such topics, but all views are respected. In my time at PP there has never been a heated debate - if opinions differ there can be a momentary silence, when I think users are reflecting rather than feeling uncomfortable by the difference of opinion.
There are mixed views about the responsibilities of parents, where some blame poor parenting and consider that parents should be more intrusive, searching their child's room or school bag before they leave for school, that children shouldn’t have mobile phones or certain apps on their phones, or that children should be involved in extracurricular activities to prevent them from getting into troublesome situations. Others believe that the police, schools, educational facilities and the government need to take greater responsibility in the safety of our youths.
Outside of the group meetings, we have been invited into churches to speak about what we do and to pray together with the congregation. We attend anti-knife crime marches with other anti-knife crime organizations to demand the government listen to the families grieving and a community affected by knife crime.
Alternatives Conference: An interview with Deb Trueheart, a lead organizer
July 7th-11th, 2019
Written by Emily Cutler
The National Coalition for Mental Health Recovery was pleased to host the Alternatives Conference in Washington, D.C. on July 7th-11th, 2019. (see https://www.alternatives-conference.org).
The consumer/survivor/ex-patient movement has historically represented a group of activists with lived experience of emotional distress, trauma and/or mental health treatment. Today, many in the movement are moving away from the term "consumer" and are choosing terms they more readily identify with. While consumers traditionally have identified as having positive experiences with mental health services and psychiatric treatment, 'survivors' and 'ex-patients' feel they have had more harmful encounters with mental health services and identify as having 'survived' coercive interventions (Morrison, 2013). Many people also identify as 'peers' and work as peer specialists within the mental health system. These groups all share the common goals of expanding consumer- and survivor-delivered services, increasing the self-determination of people with mental health diagnoses, and decreasing stigma and discrimination against those with psychiatric histories. The Alternatives Conference provides a space for these groups to come together and discuss challenges and opportunities related to these goals.
EC: What is the Alternatives Conference?
DT: The Alternatives Conference is planned and implemented for and by people in the peer recovery/liberation movement to come together and share their lived experience with one another. The mission of the Alternatives conference, now in its third decade, is to include as many diverse perspectives as possible, and is renowned for offering the latest and best information in the peer movement.
The Alternatives Conference is a place where peers come together to share our wisdom, strength and hope; where we make room for all the ways we experience and express life; where we turn our experience into fuel for our truth-telling. We have taken good notes about what helps and what hurts as we have navigated experiences of trauma, mental health diagnosis, and/or substance use challenges. We have become experts in our own lives, and we share that expertise with one another.
This year’s theme was Standing Together, Celebrating Our Gifts, Raising Our Voices. We stand together as a vibrant learning community; celebrate our skills, talents, and wisdom; and learn to use the power of our collective voice to influence and create policy, programming, and support. We represent a broad spectrum of perspectives on mental health and personal choices in the language we use and how we choose to respond to our emotional suffering.
There is room in our movement and at this conference for those who choose traditional mental health treatment, and who may or may not take medication, for those who use intentional peer support, or alternative therapies and mind-body approaches, for those who use art, movement, and creative expression, for those involved in social action, advocacy, and reform, and for those whose focus is Mad Pride and neurodivergence and for all the ways we intersect with each other.
EC: How did the Alternatives Conference historically come to be?
DT: The Alternatives conference grew from the roots of the mental patients’ liberation movement, now known as the peer recovery movement, which started in the U.S. in 1969 with the founding of the Insane Liberation Front, a self-help and advocacy group in Portland, Oregon. Riding the wave of the civil rights movement, psychiatric survivors were a small but fervent group of activists focused on human rights and liberation. In 1972, the first national conference—the Conference on Human Rights and Against Psychiatric Oppression—was held in Detroit as a way for those early pioneers to come together and share their common experience and develop strategies to advocate for themselves and others. They had no funding and for twelve years, conferences were held on college campuses or in other inexpensive locations.
By 1985, the Community Support Program of NIMH had become convinced that the peer movement had important ideas and skills to contribute to community inclusion and they funded On Our Own of Baltimore to host the first Alternatives conference. Alternatives then became the movement’s annual conference.
According to Dr. Ron Manderscheid, Executive Director of the National Association of County Behavioral Health and Developmental Disability Directors and the National Association for Rural Mental Health, the most important innovations in the mental health field in the last 20 years have been inspired and created by the peer movement. The most important innovation is the recognition that people who experience emotional distress and crisis can and do recover to live full lives in the community. The peer movement has also advanced alternative understandings to traditional biomedical models of mental illness, including trauma-informed paradigms that view distress as a response to marginalization and violence. The conferences have also highlighted the importance of the peer voice and peer support in transforming the system from its focus on maintenance to promoting recovery.
Two years ago, the Alternatives Conference lost its government funding and has returned to its roots of holding the conference on college campuses funded solely on registrations and sponsorships. We are excited about the freedom to create the conference “On Our Own” again. (Referencing the 1978 book On Our Own: Patient Controlled Alternatives to the Mental Health System by early activist Judi Chamberlin, which became the standard text of the psychiatric survivor movement.)
EC: What makes the Alternatives Conference distinct from other mental health conferences?
DT: The biggest difference is at most conferences on mental health, the workshops are presented by credentialed professionals. At the Alternatives Conference the most important credential is having “lived experience” of emotional distress, trauma, mental health challenges, or receiving mental health treatment. In fact, if someone without a lived experience wants to be on a workshop, the lead presenter must be a “peer” -- someone from the peer recovery movement with lived experience.
The Alternatives conference looks like most conferences: there are workshops, keynotes, caucuses, exhibits, and fun activities. Yet there is a palpable feeling of joy and freedom for participants to be with peers who have gone through similar circumstances and experiences. We can let our guard down and relax into a sense of acceptance and trust with one another.
EC: What are you looking forward to most about this year's Alternatives?
DT: I LOVE the alternatives conference. I am amazed by the variety and breadth of the workshops and presentations. When I look through the bios, I read about people who have had experience with extreme states of consciousness, emotional distress, thoughts and attempts of suicide, trauma responses, homelessness, incarceration, addictions, and more. Yet, when I go to the keynotes, workshops, and caucuses I experience strength, resiliency, healing, hope, humor, knowledge, skills, and heart-centered sharing. The level of expertise that each person brings blows me away. This year’s dance had a superheroes theme with the option of wearing a costume. I’m convinced that each person at the Alternatives Conference is a superhero in their own lives!
I am looking forward to reconnecting with friends and peers from all over the country. I am looking forward to deep, meaningful, enriching conversations. I’m looking forward to learning from people I admire. I’m looking forward to meeting new people and creating new networks. I’m looking forward to hugs and probably some tears. And I’m also looking forward to being challenged by new ideas, new language, new ways of thinking and stretching into new possibilities!
EC: Can you tell me a little bit more about the Hill Day pre-conference?
DT: Another way the Alternatives differs from most mental health conferences is its focus on advocacy. As I said, Alternatives has its roots in the civil rights/liberation movements. Its early focus was on eliminating oppression and advocating for a seat at the table to influence policy and programs. We advocate for voice, choice, and self-determination. A guiding principle in the early movement was “Nothing About Without Us!” That focus has not changed.
At all Alternatives conferences, there are workshops on building advocacy skills. This year, we have a unique opportunity with the location of our conference in Washington, D.C. We are planning a two-day pre-conference on Monday, July 8th and Tuesday, July 9th. Monday will be a Public Policy and Education Academy, where participants will learn from panels of experts how to do direct advocacy. On Tuesday, they will go to Capitol Hill to meet with the elected representatives in their congressional districts. There has been significant preparation ahead of time where peers have developed policy priorities that they will speak about to their representatives. This is a powerful way to participate in active citizenship and stand together, raising our voices.
EC: What do you think community psychologists and other researchers and practitioners in the mental health field could learn from the Alternatives Conference?
DT: Alternatives is life-changing for peers and I believe it can be life-changing for you as well. My hope is that you will have an opportunity to expand your notions of what is possible with a mental health diagnosis, that you will learn about the Peer Recovery/Liberation movement and be able to refer people to our mutual peer support groups, peer-run programs and peer-run respites. You will find workshops in the following areas and we offer CUs from the National Association of Social Workers.
For more information about the peer recovery/liberation movement and peer-delivered recovery services, check out the National Empowerment Center at https://power2u.org/
For a list of consumer-run statewide organizations, visit https://power2u.org/consumer-run-statewide-organizations/.
For a directory of peer-run respites (i.e. short-term, residential alternatives to psychiatric hospitals), visit https://power2u.org/directory-of-peer-respites/.
Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. McGraw-Hill.
Morrison, L. J. (2013). Talking back to psychiatry: The psychiatric consumer/survivor/ex-patient movement. Routledge.