December is normally a frosty month. There’s a bite in the air. Many of us have difficulty insulating ourselves against the hostility in recent news stories in Ireland relating to disabled people. Value, respect, love and solidarity are missing, when these virtues are demonstrated by well meaning people it’s usually in the context of infantilisation, charity, degradation and sentimentality. These gifts come with a huge ego attached and an unspoken demand for compliance and gratefulness.
‘Useless eaters’ was coined in the late 1930s by the Nazis. A phrase that has haunting resonance in our current climate. This hateful term was used in the T4 Program whereby the State killed several thousand disabled children. The killings were also known as ‘killing with kindness’. The so called kindness was to relieve the family and State of the responsibility and financial burden of disabled people.
Legacies can bequeath a sinister ideology. Historically, Ireland has never been a leader, always a courtier. Slow in acknowledging abuse and wrongdoing even when highlighted by other realities and truths. The perpetrator could always rely on the State’s protection and cowardice.
A General Practitioner over medicates her daughter resulting in death. Many questions remain unasked and unanswered. The bone of contention is not so much the Jury’s subjective decision in this case but the general consensus that followed.
Martyrdom, sentimentality and fear of having to support a disabled daughter, son or sibling gets legitimised and forgiven by the idiom ‘there but for the grace of God’.
Content & tone relating to various newspaper interviews during November had similar trajectories igniting an unspoken truth that many disabled people fear. Headings in newspaper with remarks from parent carers such as ‘ Minding my disabled daughter: ‘I don’t want to do this anymore’ are laden with deeply rooted prejudices. The kernel of both interview & subsequent opinion piece highlighted the lack of residential & respite options available for disabled people. There was a call for ‘a public conversation about the role of parent carers’. While the desire for a public conversation is being aired, the weary, frustrated voices of these parent carers can be heard using dangerous and disturbing descriptions of their children for example describing a daughter as ‘damaged goods’ or another as ‘ a curse’. A public conversation regarding carers, including parent carers, may well need to happen, however this conversation is in danger of being one sided. The discussion perpetuates an already existing ideology that places disabled people as burdens to families and society.
One particular parent was awarded carer of the year in 2015. Along with many others, this mother saves the state four billion euro per year. This parent was lauded for being so ‘honest’ about her situation. In acknowledging her commitment to her daughter, it is worrying that such a conversation has slipped into pathologizing disabled people’s lives.
While describing her daughter’s daily support needs, ethical issues of privacy would seem to be forgotten. This type of public conversation removes dignity and the right to a life free of judgment & blame. Disabled people should have access to independent personal advocacy services with statutory powers to ensure their lives and rights are respected. Issues of resources should never intrude on or diminish our personhood or value. The language of worthlessness is appalling.
There are alternative methods of highlighting the inadequacies of the Government rather than focusing on a mother’s sense of loss & despair. The carer narratives are all-too familiar, these stories echo a jaded conversation that needs to be reworked for a desensitized audience. Ireland has yet to ratify the UN Convention on the Rights of People with Disabilities (CRPD). The Government austerity cuts to services during the crisis have not been reversed. These issues are central and should be the focus rather than disabled people as ‘burdens’.
We live in a climate where valorizing carers & mothers comes by way of ignoring the violence experienced by disabled people. These unbalanced responses to carers and their unquestioned roles allow the conversations to stray into legitimizing eugenics. We are living in a climate of conservatism where the ranking of peoples worth is measured by economic productivity alone.