Disability as a unique demonstration of diversity – not misery

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing.

Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition to this.

She also suffered from a litany of health problems, including chronic constipation and haemorrhoids, incontinence, spina bifida, gastroesophageal reflux disease, asthma, rhinitis, menstrual difficulties, and hip pain. She couldn’t talk, nor did she have any ability to empathise.

Ruby was prone to killing pets or small animals. The pair couldn’t enjoy play dates or socialise with other families. Instead, they were all alone in their Blenheim state house.”

Knox was the sole carer for Ruby for 20 years. Ruby was non verbal could be violent. In court, the Judge heard how Knox had fought hard for her daughter’s care but continually felt she was being ignored and dismissed by the health profession.

This case feels horrific and heartbreaking, but not surprising and that lack of surprise, mixed with horror, settles on more than one aspect in this story in a confusing melee.

First up, our urge, as a society, to move this case from the category of murder to that of mercy killing is deeply troubling. It speaks to our beliefs around disability and value and quality of life. It shows us that we equate disability with suffering. We see the combination of Autism and intellectual disability and we think to ourselves, whether consciously or not, “I’d rather be dead”. We see Ruby, with her violent outbursts and her health issues, and we assume her life holds no quality. We assume she’d be better off dead, that he mother was putting her out of her misery, that disability equals misery.

Perhaps this was a mercy killing, but from my vantage point it was a mercy killing for Knox, not for Ruby, Ruby just had to come too because without her, Ruby’s quality of life would surely decline rapidly.

The second aspect has society viewing this mercy killing as appropriate or at least forgivable, but never considers what brought Knox to this point in the first place. It shakes its head and sighs and says, how sad, that poor mother, without considering that it didn’t have to be that way. It frowns and pities without thinking about the fact that the only reason disability is equated with misery is because of us. We are the ones who make it miserable, not the disability or condition itself.

And yes, I think we should feel badly for her, my heart aches for that woman, but it also aches for her daughter, and for the life she and her daughter could have had if it wasn’t all on Knox’s shoulders. We can feel badly for her, but we shouldn’t JUST feel badly for her. We should feel bad for ourselves too, because if Knox did commit murder, and not a mercy killing, we are on the hook for Ruby’s murder right along with her. We may not have been there, or helped Knox suffocate her daughter, but we sat idly by while she struggled for 20 years. We said nothing as support for parents and caregivers of children with special needs and disability was reduced and redistributed until the point of desperation for those families.

We took the respective governments at their word when they insisted that the move from institutions to community care was going to be positive, without wondering what that community care was going to look like, or how it would be funded and supported. I’m not pro-institutionalism, but as with education’s movement to inclusion, it feels like when the move away from institutions and special education school took place, and an emphasis was put on inclusion and community care, we allowed our governments to cut funding and replace it with nothing. We put the task of caring for and raising these children and people solely on the family’s shoulders, an in doing so, we created the myth that disability equals misery, and by alchemy turned that myth into reality by offering little to no support to the families involved.

We replaced institutions with respite care, and pretended as if that was enough. There were so many problems with the institutionalised system. It was isolationist, cruel, and discriminatory. It encouraged people to see disability as something to be hidden and shunned. It needed to change. But when they closed the institutions down, that isolation didn’t disappear, it just shifted and pulled the immediate family of someone with disability in with it. Now, instead of isolated institutions, you have families living in isolation, despite being a part of a technical community. The discrimination didn’t change. As a society we still view disability as a worst case scenario, and for many it still is, because we don’t offer nearly enough support for those disabilities to stop disabling people.

Like education’s focus on inclusion, community care is the ideal, but it’s not community care without the “care” part sorted out. We are paying lip service to these terms which, if done properly are fantastic. We say inclusion as if by using the terminology we can do no wrong. But tell that to the hundreds of students in NZ who fail to attain ORS funding, despite desperately needing it. Tell that to the kids who are “included” in mainstream classes, where they would like to be, but with no teacher aide to support them and help them succeed on their terms. Try telling Knox she was benefiting from a system focused on community care, and see how caring she thought it was.

It’s an Ouroboros, a snake eating its own tail. The lack of support leads to more struggles with disability, which in turn leads people to view disability negatively. Disability becomes hidden, tucked away, and for most of us, we don’t have to think about it. So we don’t. Its importance and need in our society is ignored. We don’t talk about what our politicians are doing wrong, and the lack of support continues. We are safe in our ignorance, until something like this happens, and we are forced to see what our actions, or lack of action, have accomplished. And even then, we don’t push for change, we shake our heads, whisper “poor woman” to each other, and we label it a mercy killing.

Defence attorney’s argued that Knox was not having sufficient breaks from her care with Ruby. Health professionals disagreed saying Knox had access to 252 days a year of respite care – a higher allocation than anyone else on their books. I snorted through my nose when I read that. Two hundred and fifty two days is a lot of respite, that’s for sure. When Eva was a baby I got 52 days for the year and that was considered a high number. But what they don’t tell you when they give you that allocation is that you have to find the carer yourself. There isn’t a yellow pages of carers out there, you have to find them yourself, and I’d put money on the fact that Ruby wasn’t the easiest person to care for, meaning Knox probably had to change carers frequently.

I don’t pretend to understand the finer details of this case. But what strikes me with complete clarity is that Knox needed help, and she wasn’t getting it. She was sinking in a system that is underfunded and under resourced. That system is perpetuating the narrative that disability equals misery by making it as hard as it possibly can be.

If disability was celebrated as a demonstration of the unique diversity of life, if it was funded without concern over the tax paying potential of the people in its care, if there were resources and facilities that were inclusive and allowed people to have support and shared care, like the Supported Lifestyle Hauraki Trust, in Thames, NZ, then maybe that narrative would begin to change. Maybe disability wouldn’t be seen as the worst possible outcome, but as just another part of life, one that does not change a person’s value, or quality of life, because we won’t allow that.

2 thoughts on “Disability as a unique demonstration of diversity – not misery

  1. Jodie

    Hey Tessa, I spent some time reading on Heather’s blog about her three adopted treasures, and then I came back to this post of yours. The things I read reminded me of the pediatrician’s letter we get a copy of after each 6 month-ish visit. I always laugh but am also astounded by the “Problem List” (called exactly that) that precedes his summary of how Michael is doing. The first such letter had 5 “problems” listed, 4 of which were resolved (by surgery or time) before Michael left hospital initially. The fifth has always been top of subsequent lists (a list of 1 now), and it is Down syndrome. Excuse me? This “problem” cannot be resolved. Michael may have some problems arise due to Down syndrome but itself it is not a problem to him or us. It really is a case of moving over and sharing the world with all sorts of people, without seeing those different from us as supposedly suffering from something. Even some of the “experts” championing our children need a change of mindset.

    1. Tessa Prebble Post author

      Definitely. I think doctors are trained to see anything that veers away from the “norm” as a problem. When as you and I know, it doesn’t have to be that way.

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