“I would hate for the last thing that documents me and my life to be inaccurate,” says Ren Williams.

“The older I get the more I veer away from the binary, and so much of my life and the way people see me is already inaccurate. I dislike the idea that I’m going to be remembered as a binary letter and misgendered for the rest of my children’s lives, my grandchildren’s lives.” 

Ren is non-binary genderfluid, and after a health scare with necrotic gall bladder last year, began to worry about what might happen after they die.

“Every year I see stories about trans people buried as their deadname, the incorrect gender, at the mercy of family members that never accepted them in life and refuse to do so in death. I feel comfortable that wouldn’t happen to me, at least on the surface – I know my wife and kids wouldn’t deadname me after death,” Ren says.

However, currently, UK death certificates have only two options for “sex” – male and female, and no “gender” or “gender identity” options. It is mandatory for someone registering a death to include this data, leaving Ren and other non-binary people concerned about being misgendered when they die.

“No one should be expected to take on institutional transphobia in the middle of grieving for a loved one,” Ren says.

When asked why there isn’t an option for people to record their gender as non-binary on death certificates, a spokesperson for the General Register’s Office, which oversees death certification in England and Wales, said only: “The law requires the biological sex of the deceased to be recorded on death certificates.”

Ash Hayhurst, a trans man, funeral director and author of the Queer Funeral Guide, points out the contradictions in advice given to registrars around recording data – that death certificates should record the name and gender that is believed to be true at the time of a person’s death, but that without an option to include anything other than two genders, this is sometimes impossible.

“If you take it back to the Equality Act, that’s indirect discrimination,” Hayhurst says.

“To not have someone’s gender identity recognised when they’re living is unjust and discriminatory. But to not have your gender identity recognised after you have died, that’s brutal.”

In 2015, Maya Scott-Chung highlighted the difficulties that even binary trans people are still facing. Her friend and prominent San Francisco trans activist, Christopher Lee, had died by suicide in 2012, but despite showing the coroner a driver’s license and other official documents that stated he was a man, his death certificate came back marked “female”.

“It felt like spitting on his grave,” Scott-Chung said in an NPR interview. “When they put RIP on people’s tombstones, it’s ‘rest in peace’. And I just felt like Christopher’s spirit will not rest in peace with a death certificate that says female.”

Suicide is an area where the lack of recognition of trans and non-binary identities on death certificates is particularly troubling.

An anonymous helpline worker told us that the lack of data around suicide has a big implication for policy work. They pointed to the fact that there’s no way to know if there is a spike or increased risk in any community if there is no data, and this has a big effect on how charities and governments can support communities at increased risk.

Considering that more than a quarter of young trans people have attempted to end their own lives, and nine in ten have thought about suicide, many feel that the lack of statistical data about how many trans and non -binary people actually do end their own lives is negligent. 

This isn’t just the case for suicide, but all causes of death. A recent example is official coronavirus statistics, which only capture deaths of “males” and “females”. There is currently no way to know how many non-binary people are dying because of the pandemic, potentially putting an already marginalised community at further risk.

“Data practices bring some lives into the foreground and cast some lives further into the shadows,” says Dr Kevin Guyan, a researcher based in Edinburgh soon to be releasing a book on queer data.

“It is vital that those who manage these systems consider how best to represent the people about whom the data relates, which might require approaches that look beyond binaries or identities fixed in time and space,” he says. 

In the USA, laws are slowly changing. In 2014, reflecting on Christopher Lee’s death, the California State passed the “Respect After Death” Act. It requires gender identity, rather than gender assigned at birth, to be recorded on death certificates in the state of California. On April 16, 2018, Oregon became the first US state to introduce non binary gender “X” on death certificates, and other states have followed.

But whether there will be changes in the UK soon remains to be seen. Last year, non-gendered campaigner Elan-Cane lost a campaign against the UK Court of Appeal to include an “X” option on UK passports.

However, there is some progress. This year, for the first time, there will be options to include non binary identity on the UK census.

Dr Guyan welcomes the change.

“Asking questions that enable people to answer in ways that best represents how they exist in everyday life is not abandoning ‘robust’ or ‘tidy’ data but a true reflection of the world we live in,” he says.

LGBTQ+ charity Stonewall, which also backed the campaign for a non-gendered option on UK passports, would welcome a change to how we record gender on death certificates.

“It’s vital more options, like an ‘X’ category, are introduced, so non-binary people are recognised for who they are in life and in death,” says the charity’s communications and campaigns associate director Robbie de Santos.

Funeral professional Hayhurst is hopeful. “The thing that needs to change is there needs to be an option to put your own gender in. It’s not just male, female, non-binary – there are many. With a recent audit of the funeral sector calling for more regulation, things are definitely about to change,” he says.

Lack of recognition of non-binary identity after death starts with death certificates, but it doesn’t end there. Hayhurst feels the funeral sector should be doing more to support non-binary people and their loved ones.

“I often hear phrases like ‘I treat everyone the same’ or ‘death equalises people’,” Hayhurst says, “but most funeral directors don’t know what non-binary is. How can they claim to treat someone equally when they don’t even know what the term is?”

In June 2016, trans youth charity Gendered Intelligence partnered with the Corpse Project to talk to trans people about how trans and gender variant bodies are treated after death.

In the resulting “Transfesto”, they called for paperwork to “remove unnecessary and invasive questions about gender” and an investigation into the funeral service industry with the aim of creating a “trans friendly practice”.

They also produced a guide about what trans people can do to make sure our wishes are respected after death, as much as possible within current legislation. The guide recommends writing a will, naming an executioner and writing a letter of wishes.

Hayhurst points to some of the changes already happening. Ceremony Matters, an organisation that supports and trains funeral celebrants, last year hosted a series of super conferences on marginalised identities.

Hayhurst spoke at “Non-binary identities: understanding LGBTQ+ identities”, and was excited by the turnout. He feels there is a real desire within the funeral sector to consider how to respect queer and trans identities in ceremonies.

“It goes back to the AIDS epidemic,” he says. “Good funeral directors will make sure that queer family are held at funerals, for example when the ceremony is for someone who has only been out to some people and not others.”

Hayhurst remembers one funeral where the biological family had disowned the deceased person, but after their death were trying to “take over everything and invalidate their identity”.

The family insisted on entering the funeral first and being in the front row. When the person’s queer family came in second, the funeral director said: “And now for the important people.”

Hayhurst has also heard of funeral directors who have scribbled out “M” and “F” options on cremation forms and written in more suitable gender options. “To lie on one of these forms is an offence,” Hayhurst says, “so therefore to lie about a non binary person’s gender is technically an offence.”

He also stresses that people can change funeral directors if they’re not satisfied and that there is no legal requirement to even use a funeral director. “If there isn’t somewhere in your local area you trust to hold a funeral, then you can do it yourself,” he says, and a section of his Queer Funeral Guide outlines how. The Good Grief Trust has also began running a weekly online café for bereaved partners of LGBTQ+ people.

February is LGBTQ+ history month, but the UK is still rewriting trans people out of history and present. Hayhurst believes death certificates are the best start. “Once we start recording non binary deaths, it will become part of the status quo. Then non-binary becomes part of our language, and this filters down, changing the whole funeral sector.”

Useful websites and helplines:

• The Gender Trust supports anyone affected by gender identity | 01527 894 838
• Mermaids offers information, support, friendship and shared experiences for young people with gender identity issues | 0208 1234819
• LGBT Youth Scotland is the largest youth and community-based organisation for LGBT people in Scotland. Text 07786 202 370
• Gires provides information for trans people, their families and professionals who care for them | 01372 801554
• Depend provides support, advice and information for anyone who knows, or is related to, a transsexual person in the UK
• London Lesbian & Gay switchboard (LLGS) is a free confidential support & information helpline for LGBT communities throughout the UK | 0300 330 0630
• Manchester Lesbian and Gay Switchboard is a free support, information and referral service for the Manchester and North-West area | 0161 235 8000
• Stonewall for more information on other LGBT services and helplines | 08000 502020