communication is a human right
Content warning: This post discusses suicide, self-harm, forced silencing of Autistic people, and discrimination on the basis of communication. Please read it with caution if these are triggers for you and contact a support person, or use the Lifeline online chat option for support if you experience dysregulation. Most importantly, please remember - you belong. You are loved by your ND community.
Image description: A person holding their finger to lips as though to tell someone to be quiet.
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Yesterday, I was put on a “communication plan” by the Director of Educational Leadership in the Regional North Directorate, without my consent and without consultation with me about my needs or any potential adjustments.
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A communication plan is not a legal document; it is also not a Department of Education template. I have been told this by staff who have searched the portal for me.
One of the aspects of being an Independent Advocate is that People Tell Me Things. I have a range of people around the state, and around Australia, embedded in every system. They are whistleblowers, and protected by law; they are all PWD, or parents of Disabled children, who are angry at the way that the systems they work in systematically brutalise Disabled folk. They want it to stop.
Image description: A teacher pointing to writing on a white board. They are holding a green white board marker. They have long dark hair, glasses, and a blue denim shirt over a white t shirt.
many Workers in Education stand with Disabled people
Some of them are school principals; some of them are school admins. Some are classroom teachers. All of them care, deeply, about the advance of the rights of Disabled children and families. Notably, this murmur of resistance to the dehumanisation of our community seems to be spreading - at the time of writing, the NSW Teachers Federation have formed the first ever Disability Special Interest Group (and as an Autistic, that title did make me chuckle!)
I am so relieved to see the spread of Disability activism in this way. Disabled workers in education are subject to some of the most extreme breaches of the DDA and ADA that I have ever seen. It is impossible to achieve reasonable adjustments as a classroom teacher, and even asking puts workers at such risk to career progression that it is not a tenable ask. Neurodivergent school executives and classroom teachers alike face extreme WHS risks from workplace stress ; and to be frank, I hope to see more WHS claims on this basis.
The intersection of workers rights and disability rights is an area of such profound nuance that it is difficult to work through here. Achieving a balance between the rights of disabled parents and the rights of workers is certainly not going to be easy.
However, what I can tell you, is that externally enforced ‘communication plans’ for parents with communication needs, that they have not been consulted on, and that are used to ‘manage’ them like objects - when they are people - are not the answer.
In the pursuit of workers rights, this approach heavily impinges on communication rights. The plan I was sent also heavily impinges on the right to free movement and association. The simplest solution with regards to this is likely (and ironically) going to be: communication. Consultation. Working together. I will come back to this.
People working in education are exhausted, as am I, at the constant march out the door through a lack of support, intensive coercion and ‘push out’ of Disabled children and their often Disabled parents. They want a more inclusive system. They are the reason why I will not countenance ‘teacher bashing’, because I know how many truly good people there are in the DOE. Like us on the outside, they’re gasping for change.
And so, they tell me things. Give me access to documents.
And yesterday, I asked a number of them to go looking to see what they could find regarding policies or procedures governing the implementation of “communication plans” with parents of children in NSW Public Schools, where the parent has a disclosed disability that includes communication needs.
Guess what they found? Nothing.
Communication plans are potentially illegal
If you have ever been put on a “communication plan” when you advocated for your child as an Autistic parent, here are some things you should know:
These documents are not standard, nor common. They are also potentially, inherently discriminatory. If they are implemented after you have made reasonable complaints with grounds, they are also possibly an act of victimisation. Further, they tread the line of being an environmental restraint, under the Persons with Disability (Regulation of Restrictive Practices) Bill (2021) draft in NSW.
Image description: A brown wooden judge’s gavel.
Parents are the service user: new judgement in NSW
Parents should know that as of November 8, 2023, a parent in NSW has successfully won a claim against the Department of Education on the basis of primary and direct disability discrimination.
This is a landmark case: in this matter, it was substantiated under s.49M of the NSW Anti Discrimination Act that the disabled parent in the matter was the service user - not just the child.
This matter is a profound point of caution for the Department of Education in how they approach Disabled and/or Neurodivergent parents. The DOE can no longer legally justify approaching disabled parents with contempt and excessive control. It has levelled their previously quite extravagant powers, somewhat.
The waters are now very, very muddy.
All matters are different, and no two judgements are the same - but this is a very strong message to DOE legal services to censure their executives, and advise them to act with a little more humanity when engaging our community.
It is also a reminder that no DOE policy, procedure or plan is above the law. Anti Discrimination legislation is, and will always be, paramount.
Image description: A black and white image of a person screaming. It is blurry and overlaid over a person’s calm face.
These practices harm:
It is important to understand that under the terms of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) communication is a human right.
When we infringe on human rights, we do harm - always. It is for this reason that the Disability Royal Commission has recommended a pathway to elimination.
Restriction of communication is not novel or rare for people with disabilities. We experience it every day. Normally, when we think about communication restriction we think about a lack of access to communication aids and methods - assistive technology, AUSLAN.
However, for those of us on the other extreme end of the communication spectrum (not that I believe in a spectrum, or functioning labels, but bear with me!), communication can be complicated by a range of invisible factors - memory, impulse control, trauma, cognitive differences in information processing that can complicate our expression.
For me personally, this means that I can find it difficult to summarise. I have never been concise, and when I am under stress, this becomes even more tricky. I cannot pick out ‘the key point’ very easily. I cannot pare away detail - all detail matters to my brain, and it can be actively physically painful to try to do this. Yes, physically painful.
I am also hyperlexic. I tend to use complex language, which can appear jargonistic. I often need to explain every last part of an idea, or I experience a high level of distress. My processing is quite delayed - I often need a lot of time to process right through an issue or an idea.
What this can look like on the surface is a high level of talking, and writing, and delayed reactions after initial declarations of a position. Processing confusion, difficulties with memory and information tracking and retention, make it hard for me at times to remember what has been said, or to understand what a person is saying. It is exacerbated by stress.
It can be confusing for those around me, which I acknowledge. Without appropriate ‘translation’ and built in support, it can become overwhelming for my communication partners, which I also acknowledge. Yet, also, it is involuntary and simply cannot be solved through force. It can only be adjusted for, through patience and partnership, in which my dignity as a Disabled person is centred.
This is where we come up against the limits of imagination that we see in some members of staff in the DOE. There are many working in the education space who do not have the capacity for collaboration. All they know is control.
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The ‘communication plan’ I received, which you can view publicly here, is extremely restrictive, and limits my written and verbal communication. Please bear in mind that I have never, not once, been abusive or offensive in my communication. I have just been assertive and long-winded. It limits my movement, my expression, and my association with others at the school.
This plan polices and prescribes every part of how I would interact with the school which our school principal describes as “a hub of the community”.
Does this extend to all? Does this document read like a warm welcome to you?
Sending a document like this to an Autistic person with complex communication needs, not only lacks empathy, it is in breach of a number of human rights. And, while I acknowledge that the needs of workers matter too (they very much do!) the aforementioned balancing of rights can be thoughtfully achieved without resorting to this.
Restricting the communication of an Autistic person, and engaging in acts that result in feeling dehumanised, a second class citizen - these are not honourable acts of care and diligence. These are acts of violence.
A communication plan, as this is written is not a reasonable adjustment. Reasonable adjustments should be done, always, in partnership and collaboration. Consultation and with a focus on the particular needs of the Disabled person.
We must, whenever we move to restrict any right or freedom of another person, consider the core of why there is such strong opposition to the use of any restrictive practices. Namely:
Restrictive practices can cause serious physical injury, psychological harm and may cause death. Psychological harm may include trauma, fear, shame, anxiety, depression and loss of dignity. Restrictive practices can damage relationships and trust between a person with disability and the person carrying out the restrictive practice, such as a support worker, doctor or teacher. They can increase power imbalances and feelings of helplessness and lead to a loss of independence.
(Disability Royal Commission, ‘Restrictive Practices: A pathway to elimination’, 2023.)
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Image description: A person sitting on the floor. They have brown skin, and curly brown hair in a bun. They are wearing a blue pleated skirt and an orange jumper. They look sad, and their hands are held to their chest as though they are protecting themself.
Remember these words, always. Those of us who experience coercion, restraint and restriction of any kind, carry the harm of it with us in our bodies, in our minds. It can transform into further harm that echoes and burns in us, long past the initial violent acts.
Autistic people, in particular Autistic women, and those without co-occurring intellectual disability are up to 66% more likely to die by suicide. We are less likely to be included; less likely to be employed; more likely to be socially isolated. In a study of suicide rates, the key finding was that isolation due to discrimination and stigma was the key contributor to our extremely high suicide rates. We are more likely to be murdered, or killed while being restrained, and the average life expectancy of Autistic people is as low as 36 years of age.
Cutting Autistic people off from community, from communication, and controlling their access to these things is isolation. It is incredibly violent, and damaging.
As for me - I held in my distress at being sent this document of restriction, this sign of deep contempt, until long after my child was in bed. Proudly, and with dignity, I carried this painful experience beyond bed-time, gently and fairly parenting him until he was asleep.
I will not allow harm done to me, to become harm done to my child. Not now, not ever, as Gillard would say. This is my resistance: survival, pride, breaking the cycle of trauma. Taking cruelty, and transforming it into kindness.
Not all of us can be alchemists, mind. Many ND folks cannot, and this is not their failing. There is just not enough support.
Then, I curled into a little ball, and cried for a very long time. My good friend - who is also Neurodivergent, and a mother to ND children, and a teacher - came to watch over me, brought sour snakes and paddle pops and gentle comraderie. She sat beside the bed while I came back to my body, surfing the distress skilfully, as I have learned to do - so I can survive this hostile world.
She read through the document I had been sent.
“This is disgusting, Sarah. Disgusting.”
She is right. It is.
Image description: A person in a black top that sits off the shoulder, and blue jeans. They are holding a sign that says “this is not my secret, it’s yours”.
