I first decided to host a party in Spencer’s memory after last year’s Houghton which I returned from feeling inspired rather than depleted – a strong testament to the magic of this amazing festival – keen to combine my love of dance music with a wider political and personal project.
I have always wanted the night to be a catalyst for solidarity though I feel that fund raising parties have a difficult line to walk between being too overtly political or throwing a great night but letting the motivating event slide into the background of people’s consciousnesses. It is often too easy to attend such a night and feel good knowing that your money for the ticket is supporting a good cause but let that be the zenith of your engagement with the issue. But the flip side is a night which just rams the issue down your throat and hence leads to frankly a mediocre night out. As such I thought I would create a little list of a few things people can do beforehand so that on the night we can just all have fun which really is the most important thing. Don’t worry these ‘tasks’ are not particularly arduous nor is there any pressure to do all, or any, of these things. I just wanted to give the option for people to do something active as I feel proactive engagement grows solidarity more than just the passive donation of money. Though money is also very good as unlike solidarity, people can do tangible things with money! If anyone wants to donate extra money to go towards INQUEST just drop me a message. Come to the party and don’t do any of the below or do all of the below but don’t come – it is really up to you!
The things below are listed in a rough order of my preference.
Spencer
This party is in memory of Spencer. Almost all of you will not have met Spencer. I was thinking about trying to write something, but words would not be able to do justice to the depth of spirit he carried with him. Instead, I have just uploaded some photos and videos (which are at the bottom) to this google drive so people can just flick through this. I hope it will give you a slight feel for the lovely young man Spencer was.
(It should be public but if anyone can’t access just message me)
Email your MP about INQUEST’s campaign for a ‘National Oversight Mechanism’
“The only thing that makes sense of the loss of your loved one is that maybe lessons will be learned and the same thing will not happen to someone else”
– Andy McCulloch, father of Collette McCulloch
INQUEST are the only charity and campaign group that specialise in providing expertise on state-related deaths and their investigation to bereaved people. In June they launched their ‘No More Deaths campaign: the case for a National Oversight mechanism’ to try set us on a path to ending preventable deaths at the hands of the state.
Long story short, inquests and inquiries lead to hundreds of recommendations which are designed to prevent future people from dying. However, there is no system to oversee these recommendations or ensure changes; families have described it as “no more than a paper exercise” as we see people dying from the failing despite multiple Prevention of Future Deaths reports being issued such as this tragic case. You can read more about the campaign on INQUEST’s website here and in more detail here.
It would be wonderful if people could sign and share the petition and email your MP, here is a list of their email addresses. There is a template via the link here, just copy and paste this, add your name and send it off. Boshh.
Watch ‘First Do No Harm’ film
‘First Do No Harm’ is a 1997 movie starring Merryl Streep in which she plays the mother of a young boy Robbie who has complex drug-resistant epilepsy. Having run out of ideas Streep pursues an alternative form of treatment called the ketogenic diet. Spencer was on the ketogenic diet for about two years, and it greatly improved his epilepsy. Trivia! Several of the minor characters are played by people whose epilepsy has been cured by the ketogenic diet and Streep was so moved by the topic she gave her time freely and was not financially compensated.
I thought that this short film can convey more about Spencer’s life with epilepsy and the life of our family living with that than I could do simply trying to explain it. Merryl Streep really is just playing my mum in this film!
Read my piece in ‘Community Living’
‘Community Living’ is a magazine run my journalist Saba Salman about the community of people with learning disabilities and those around them. Hopefully this piece highlights the importance of the work inquest and the profound effect this has one people who are in their darkest moments.
Thanks for reading and double thanks if you did any of the above.
I am super excited for the 10th (tickets), it should be really special to have lots of you gathered, brought together in Spencer’s memory, to boogie and enjoy the sonic delights Patrick and Jamie are going to serve up!
mountains of my life 