I want the non-disabled community who have been sickened by Lena’s death to extend their rage towards ableism as a force in this country, writes Henrietta Bollinger. 

We should be able to be disabled, we should be able to be human and not die. 

This is a line that my friend Lucy wrote while she was adding her own voice as a disabled woman to a Facebook post I had written while processing the murder of Lena Zhang Harrap. The disabled community, and in particular those of us who are femme identified, have been reeling since this alleged murder and sexual violation. Lena was a 27-year-old woman with Down Syndrome and a vision impairment who was reported missing after not returning from a regular walk. While we still don’t know the details of what happened, this lands with the disabled community. We are very aware of the impacts of ableist violence.

And in answer to the question put by one columnist – “where is the social media outrage for Lena?” – I can tell you I’ve seen a lot of it on disabled people’s pages and feeds. Where is the march? Well, we protest differently here – but just as righteously. 

Though I didn’t know her, I have both watched and participated in this outpouring of grief. The first things that struck me were her age – so close to mine – and her interest in dance, which resonated with me as an artist too. She was described in a tribute as “having an infectious smile” as being enthusiastic and friendly, as pursuing her independence. Of course, the most significant loss is to Lena’s family who are grieving privately.

I am conscious of noting these specifics of who she was, because too often when disabled people are written about, our individuality disappears. Our uniqueness becomes folded into the ways we are dependent and the labels we are given: “special needs”, “differently abled” and sometimes still “handicapped”. Even when the term disabled is used – a term that many disabled community advocates understand as an identity label that recognises how the social and physical world oppress and exclude us – we become “the disabled” rather than disabled people. In a word, our humanity is deemed linguistically unimportant, secondary to our “disabledness” rather than both being who we are and inextricably intertwined. 

We should be able to be human and not die.

When I read about Lena I felt a bone deep, heavy, helpless grief. It was a grief that I’m sure disabled women of colour and people with learning disabilities felt even more acutely given that they would identify closer with her than me, a physically disabled Pākehā person. 

But it is a familiar grief. It is the grief I felt reading about Ruby Knox, a 21-year-old who was drugged and murdered by her mother. We should be able to need 24-hour care and not die.

It is the grief I felt reading about Bruce Rangitutia who was starved by the family members responsible for his care. He had apparently been drinking his own urine and told them he was hungry before he died. We should be able to ask for food and not die.

It is the grief I felt reading about Leon-Jayet Cole, the autistic five-year-old who was beaten regularly by his step father and died of the injuries. We should be able to have meltdowns and overload and not die. 

It is a grief I feel every time I read about the death of disabled people. It is a grief that I feel when I read about disabled people dying of Covid-19 across the world because they have been left unconsidered in their nation’s Covid-19 response. It is the same feeling that made expressing fear around the implementation of the End of Life Choice Bill so heavy to navigate.

Disabled lives are simply not valued equally to those of non-disabled people. I watch non-disabled people’s outrage at Lena’s death and remember that she died walking home. The particular horror of this way of dying is one that non-disabled people can imagine. As just a person walking home, they could be Lena. Lena could be them. The reality, however, is that so many disabled people who are murdered are not in public and therefore are not gifted this public anger as an epitaph. Instead, they are murdered at home often by their carers or other people close to them. Those epitaphs read that the horrific event was love, or mercy, or simply inevitable. 

As an example, in an interview, Ruby Knox’s mother’s lawyer claimed that caring for her daughter had already been like a life sentence because Ruby could be violent towards herself and others. Over and over, it was emphasised that she had been loved by her murderer. We should be able to be violent and still not die.

The societal conditions that allow all of this violence to be possible have come from the way we think, talk about and report on disabled people’s lives. There is a pervasive belief that disability is a problem located in us as people, in our bodies, minds or ways of being in the world rather than in how the world supports or fails us. Our lives are presented in non-disabled culture as morality tales: whatever happens, non-disabled people can at least be thankful they aren’t us. Meeting our basic human rights – housing, education, income, bodily autonomy and individual choice over the course of our lives – is often seen as too costly, inconvenient, difficult and sometimes impossible to imagine. 

We are seen as burdens rather than people, not as people who give something important to their families, friends and communities by being who they are. The dominance of non-disabled culture in our lives ranges from the passive acceptance of our exclusion – from schools, from work, from being present in our communities – to our active segregation through law and policy. There are exemptions that impact our access to everything from work to raising children. The justice system often treats with sympathy those who cause us harm. It is what contributes to our invisibility in society, what allows our deaths to go largely unnoticed or simply skimmed over by non-disabled people. 

I want the non-disabled community who have been sickened by Lena’s death to extend their rage towards ableism as a force in this country. It contributed to Lena’s death and causes less “relatable” deaths that go unseen. We have a collective responsibility to uphold disabled people’s right to be human. To do this successfully, we must name and know the force of ableism that continues to say otherwise.