Panel 2 Being a parent and an ally
'Being a parent and a disability ally' panel discussion
You should be able to watch the video on YouTube via the embedded image above or click here to watch the recording on Facebook
NZSL interpreters were present on the day and appear on the video.
Feel free to get in touch if you need this information in a different format.
On 13 April 2021 Imagine Better's senior researcher Carey-Ann Morrison, who is also the mother of a young disabled son, worked with a panel of experts to unpack some of the complexities around being a parent of a disabled child or adult and an ally in the disability rights movement.
The panelists, who are all parents of a disabled child or adult, are:
• Bernadette Macartney
• Jane Bawden
• Antonia Hannah, and
• Rod Wills.
Parents hold a complex and at times controversial position within the disability rights movement. They can both be an ally in support of disability rights and also an opponent to progressing the collective rights of disabled people. The aim of this panel conversation is to explore some of these complexities and consider issues of power, privilege and positionality.
The conversation focused on the following questions:
• Where do parents sit within the disability rights movement?
• How can parents remain critically reflective of their own power and privilege?
• How do parents know 'when to pick up the baton and when to put it down again'?
• What are some of the ways that parents can support their disabled child's self-advocacy or amplify their voice?
• How can parents manage some of the tensions involved in their own individual advocacy for their child if it is in opposition to the broader aims of the disability rights movement, for example, segregated learning settings?
Questions and answers
Lisa McEvoy asks
“How can we open the conversation around violence in the home from disabled children, so we can care for carers while upholding the value of disabled people?”
Great question. I think that the needs assessment process should take into account the needs of the whole whānau. All are impacted by violence. The needs assessment process should ask about the impact of the disability on each member of the whānau and what needs to be put in place to support all of those disabilty related needs.
In terms of upholding the value of the disabled person, framing the conversation within the context of all behaviours having a purpose shows that there is always an antecedent to the behaviour and that resourcing the person, their whānau and those who work with them to understand the purpose of the behaviour and to develop strategies for other forms of communication is super important.
This is a key question. The answer lies in caregiving being regarded as a skilled response to an individual’s needs. There will be times when the caregiver needs support or coaching to be their best with the person they are supporting. Such organisations as Mind over Matter from Susan Haldane offers insight and guidance that may be of use. Workshops and on-line delivery are offered.
Approaches more directy aligned with psychology and the understanding of behaviour arising from a series of events, the antecedents, and following the behaviour an awareness of what then comes as the consequence for a person, may again show how support can be managed in a way to de-escalate a situation. This may be in the realms of verbal or physical acting out.
I suggest that looking at the work from the Crisis Prevention Institute – CPI - will be of use. For over a decade the CPI courses were taught in NZ for human service and special education staff https://www.crisisprevention.com/Blog/CPI-s-Top-10-De-Escalation-Tips-Revisited
Finally some reading – a re-think around autism and our own understanding of some matters that may be challeneging for us. Leary & Donnellan (2012) Autism: Sensory – movement difference and diversity. Wisconsin: Cambridge Book Review Press. I strongly recommend this text – (Anne Donnellan visited NZ several times in the 1990s).
Jamie_Lee Timoti via the FB livestream
says “I'd love to get rid of the word [Downs] syndrome...”
I agree – nothing medicalises a person like naming their condition after the person who “discovered” it! What do people with Trisomy 21 think about this? What is their preference?
Using a person-centred approach allows an understanding to emerge that may be less reliant on ‘commonsense’ (mis) understandings. Particularly those drawn from the discriminatory assumptions of earlier eras. A personal practice of identifying a person by their name, and then speaking to their strengths, and respectfully of how they are supported to be successful could be concluded if needed, by saying how they might have been previously ‘labelled’ with this term, but it was not so accurate for them as a person. Model how such terms can be deflected from use.
From Ursula Christel in the Q & A –
“where is the 'voice' for the non-verbal community within the disabled person's representation? Who is 'listening' to their needs? This is a space where a parent/family member has to speak on their behalf....”
Absolutely right. Who else has the ability to closely observe and understand the non-verbal person in a deep sense, and base those observations on many years of trial and error and innovation that all parents have gone through. In all policy settings this question should be asked.
“Is there any particular article or book you would recommend for someone new-ish to this journey?”
My recommendation is to start with family organisations (like Parent to Parent!) who will present information in a family context. As well as Parent to Parent and Imagine Better I recommend Belonging Matters in Australia who have some great resources on their website. Also Janet Klees and Michael Kendrick who are leaders in the disability world. Peter Block, Hugh Mackay.
From Antonia Hannah:
There are some great academic authors like mike Oliver/Colin Barnes/ Shelley tremain/Tom Shakespeare. For education I recommend Katherine runswicke coles etc key word would be disability studies ...
The scope and depth of many texts can be a bit of a barrier. Many are written by academics for their students or peers. There are some texts that offer a broader introduction.
Davis (2017). The Disability Studies Reader. London: Routldege offers a broad sweeping sample of key work across 40 chapters.
A New Zealand publication, with a three-fold emphasis on; theorising disability support, shifting the service pardigm to one of mutual support and respect, and supporting the voice of disbled people; is: O’Brien & Sullivan(Eds.), (2005). Allies in emancipation: Shifting from providing service to be ing of support. Melbourne: Thomson Dunmore Press. Both of these books should also be available from the IHC library.
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