Sometimes it can be very lonely in the disability sector. It feels like nobody understands, the world is against you and everything is a battle. However, many people are using the power of social media to fight back against this isolation.
When my son was diagnosed with autism in the 1990s I didn’t really know where to go for support or more information. I was given a folder of material which included a contact phone number of the local Autism NZ branch. I rang the number, left a message, and eventually met a small group of parents who became my knowledge base for autism and support network. We met regularly and sometimes got speakers along. Our children were at different ages and stages and it was very helpful for me – but the expertise circle was small. There were some books available on autism but they weren’t about New Zealand.
These days a parent of a child newly diagnosed with autism can go straight to one of numerous autism-specific Facebook groups and find information, ask questions and receive help and support 24/7 from a local and global community. The parent can ask about school support and behaviour issues or just talk about how tough things are in the middle of the night with a child who won’t sleep. They can ask about the numerous therapies or interventions which are offered on the internet and whether people have used them and had good or bad experiences. There are often questions about what is out there for school support and how to access it.
Within minutes someone will usually type a reply and others will follow. These groups are usually well moderated by other parents or like-minded people who keep an eye on comments and try and keep them supportive. People who act as trolls – who try and subvert the generally helpful tone, or promote particular therapies ‒ are often quickly silenced. Things are generally pretty safe if you join and comment on well moderated sites and they usually have some rules displayed.
This connectivity in a community that is often geographically or socially isolated is really valuable. There can also be cross over with mainstream media. It is all part of that important relationship building that keeps us going.
My son is an adult now but a lot of our experience is still relevant to those just starting out. I also know how things are supposed to work so can tell people about aspects of our complex system such as NASC. There is a lot of misinformation out there and people not getting the support they are entitled to. For example, many people don’t know about things like the Child Disability Allowance, or that their child is legally entitled to go to the local school all day even without a teacher aide.
Busy Facebook sites I belong to (and for some a request to join is required) include Autism in NZ, Autism Action NZ, Aspergers Syndrome NZ and ViPs Inc NZ. The Disabled People’s Association (DPA) NZ Facebook page provides regular information about the Convention on the Rights of Persons with Disabilities and other disability topics locally and internationally – again it is well moderated and safe.
Social media is also linking with mainstream media in with community activism. Here’s an example.
In May 2013 there was a shocking headline and article in the Sunday Star Times: ‘Boy left to eat grass at horror home’.
This was a report on extensive and ongoing abuse at a disability residential provider in Pukekawa. It was a major investigation by Kirsty Johnston. As health reporter, she started reading reports from the Health and Disability Commissioner and doing some investigating and asking questions of the Ministry of Health, and before long found that a lot was not right in the disability sector. She wrote a series of articles for the paper.
As a keen social media follower with an interest in disability policy I retweeted and shared these articles. I sent her an email thanking her for her work, as combatting disability abuse is a passion of mine. I often respond to journalists, particularly when they write articles about disability issues. There is often an email address with their byline. Usually I commend them but sometimes I gently chide them for disablist language or promoting disability as heroic or tragic. Kirsty eventually won a major journalism award for her work but by then was off on her OE.
By mid-2015 Kirsty was back and working at the NZ Herald. She was given the education round. It didn’t take her long to realise special education was a minefield as she heard regular reports about children who had missed out on funding or support. She found there had been significant underspending on special education by the Ministry of Education, and that there also just been an ‘update review’ on special education for the Ministry, although it had mainly involved professionals.
As we had had earlier contact about disability issues, she emailed me to ask for stories from parents in the special education system about how things were going for them. It was good journalism to try and find out what special education policies actually meant to families on the front line. So I offered to put her request onto some Facebook autism parent groups. She gave her contact details so people could contact her directly.
Straight away many angry parents told her how hard it was to get support. Here is one of the first articles. Many schools were asking parents to pay for teacher aides or wouldn’t let the children come to school. It was hard to enrol disabled children in preschool. The stories kept coming. Kirsty wrote several articles in New Zealand’s biggest-circulation newspaper and the stories were taken up by other media. By the end of the week the head of the Ministry of Education had to respond.
In the background were ongoing rumblings on Facebook about the special education update review and lack of parental engagement. Some parents made appointments with senior people in the Ministry of Education’s Special Education and asked for the consultation to be extended. The Ministry eventually agreed, particularly now it had become headline material.
The dates, venues, background material were posted on Facebook and parents, teachers and other educational professionals reported back on the meetings as they were held around the country. The mood of the well-attended Wellington meeting that I attended was sad and angry. Some wrote their own letters to the Ministry and posted them online too. Hundreds of people attended these meetings over a few weeks. Progress will be reported back on those pages – and the review will not be forgotten.
Now there is a select committee review on some special education issues. Catherine Delahunty, the Green Party MP on the Education and Science Select committee, has been pushing for a review for several months. She was successful in getting an Inquiry into the identification and support for students with dyslexia, dyspraxia and autism. Kirsty Johnston has now analysed the first of these submissions to go online.
But this is not the first select committee on special education that has been instigated and supported via social media activism.
Before we had Twitter and Facebook there were blogs and websites. And there was one called Humans started by our own Russell Brown. In 2008 the National Government won the election and straight away passed the legislation for National Standards without public scrutiny. Some of us were worried about the effects National Standards would have on children with autism and had a little campaign, reported on Humans, to get the Education and Science select committee of politicians from various parties to investigate. The committee asked Ministry of Education officials to report.
Eventually the committee recommended merely that they keep monitoring, and several years later our concerns have been proved correct – National Standards are not a good measure for the teaching and learning of autistic kids, and can be detrimental. National Standards results for all students including those on ORS have to be reported to the Ministry and schools are not allowed to indicate if any of the students have learning disabilities. So the league tables from the less inclusive schools look better. Blog sites like Humans are archived and here is my post about it from 2011 covering the select committee’s report.
This Access blog is another way to talk about disability after the Humans blog outlived its format. Anyone can send in a blog post to Access on a disability topic. I have found it good way to report my research. There have been long discussions about disability policies such as Funded Family Care from people who are at the front line of these things and know the details. There is some great critique of Ministry of Health policies and wonderful personal stories. All communicated to an online audience including those who might not know much about disability issues but are now allies.
So there are numerous blogs and ways the disability community is connecting and sharing concerns, information and activism. Many organisations such as IHC with its Hot Issues e news and CCS Disability Action share information electronically about disability issues – which can then be further shared though social media.
It also doesn’t matter what your impairment is, as social media can generally be made accessible. One of the most active social media people I know is a young man in a wheelchair who uses blink technology to tweet and Facebook and post YouTube videos. There are, of course, still barriers for many New Zealanders such as lack of access to the internet, which is a political issue.
There are other social media tools developing, for example Loomio, which is a New Zealand social media initiative which came out of the Occupy movement, and is an easy way for many people to discuss specific topics.
So social media can play a big role in disability inclusion. Participation in social media is like posting on a public notice board. For those new to it, I would advise them to only interact with sites which have good moderation, anonymously if they prefer, and not to give out information they don’t want others to know. To share posts and material that they find useful or interesting. To keep things brief and not argue with trolls. To use social media to overcome isolation and promote inclusion.