In the summer of 2016, I went to our family doctor for help in advocating for supports for our family. He mentioned contacting Autism Ontario to assist with that advocacy. I laughed pretty hard at that. During this time Autism Ontario was backing the Wynne Liberal’s cuts to autism services. It was parents that did the leg work with respect to advocacy while this organization tucked tailed and ran for the hills, leaving many families behind, and with added pressure to push for change. My family has never, nor will we ever support Autism Ontario since it is quite clear through their actions their focus isn’t on families or individuals effected by autism.
In one of their recommendations Autism Ontario released recently regarding how to advocate the system, they indicated that if you are irate or having a bad day, that you could be profiled as “sick” by people in the system. This is a very clear example of systematic discrimination us caregivers and person’s with disabilities have to face in the system of supports, and it needs to change! This is against so many laws in Canada not to mention international human rights law.
Autism Ontario’s Rule #1 of advocacy reads at the time of this post (emphasis added):
When family members are overly negative, aggressive or obnoxious, they risk being avoided and labelled “sick,” and often alienate other families, potential supporters and problem solvers. When advocating, it is usually wise for family members to speak in a calm, polite, dis- passionate, but sincere and firm manner (Baskin & Fawcett, 2007; Edmonston, 1984).
When I worked in the financial sector, I dealt with irate clients all the time. Not once did I ever consider any of them “sick”. Moreover I empathized with how frustrating a situation I was trying to solve on their behalf was and – as a professional – was able to deescalate any situation and bring any situation to a resolution on the bank’s behalf. I have a good record of that professionally. Most of those working in the system of supports at agencies or at the school level that are dealing with children who have autism have a background in behavioural sciences. So why does a former financial analyst know more about deescalating a situation and can empathize with his clients more than those with PhDs, and master’s degrees in human behaviour?
Furthermore, this approach does not take into consideration that most of us caregivers and person’s with disabilities are actually very nice people, and that consistently nice people are walked all over in the system of supports (even through advocacy organizations and support groups), and their kids are under supported or blatantly not accommodated as a result of being nice and not putting up a fight. I’m not just speaking on behalf of my own lived experiences, moreover the hundreds if not thousands of other families across Ontario that have been nice to people in the system and have nothing to show for it or have been completely jerked around and thrown under the bus rather than being assertive when they needed to be as a result of the lack of public oversight and accountability in the support sector and lack of experience in the system. It’s the system that makes us advocates through lived experiences, and now there’s a ton of us, and rather than threatening us with profiling and discrimination, the support sector and law makers are going to have to deal with the storm they caused and change. There are too many of us to ignore, and this has gone on for far too long.
I’ve written a lot on this blog about our situation and what “being nice” has done to this family. The way the system is built, and until that changes us caregivers and people with disabilities have a right to raise our voice without reprisal for doing so. To suggest otherwise, or excuse reprisal for doing so, is actively engaging and complicit in illegal profiling and discrimination, not to mention trying to warn us off of political advocacy. Here’s the other half of Autism Ontario’s rule #1 for advocacy:
Probably 90 percent of family concerns can be resolved quite simply at or near the front-line (school or agency) level. Coming on too strong, too early with top managers or powerful outsiders (e.g., elected officials, lawyers, mainstream or social media) usually only complicates attempts to address problems. Families need to understand that advocacy is more about building relationships with key members of “the system,” rather than shouting, embarrassing decision makers and breaking down proverbial doors.
More interestingly Autism Ontario has failed to address how to remove the illegal profiling/discrimination barrier from a family that has been labelled “sick” by the system. None of that appeared anywhere in these “advocacy” recommendations. What does that mean for those affected by autism, and why would their services be effected for being irate or difficult considering many of us families live in very difficult circumstances which is often compounded as a result of the lack of supports especially through COVID? Yet no understanding of any of that from a lobby group that’s supposed to be advocating against discrimination of people with autism and advocating on behalf of families. That’s pure ignorance, and it’s completely patronizing.
While I’m not saying that you should go out and yell at people in the system or rail against them, however expressing emotion when trying to get your family supported by the system should be entirely acceptable and understandable towards people working within the system. Those dealing with any form of disability are vulnerable people. They need to know what you are going through and how it is effected you in order for you to be properly supported. It shouldn’t be held against you at all on any level.
When it comes to the rights of vulnerable people, if those in the system aren’t co-operating after attempts to resolve complaints (often a family has an uphill battle to climb as a result of having to prove with indisputable evidence to an agency that a complaint has merit to begin with) you kick down those proverbial doors until these people start respecting human rights without excuse or apology. You do what you need to do to protect your family. I have listed some tips that we put out as a successful family and as a successful political advocate on how to advocate the system of supports. You can find that post here, and like I said in that post (emphasis added):
When you are dealing with political advocacy, stakeholders will often try and influence an emerging movement and use it to their advantage to push their own political objectives. Often when this happens it’s meant to divide and dilute your voice and your experiences in order for the voice of these stakeholders and their objectives become a consensus among the movement, and effect the course and speed of change. Some cloak this as building a more powerful voice for the movement, when in fact it’s quite the opposite that happens. There are billions invested in disability supports in Ontario, and a lot of stakeholders who have financial interests in the system will do what they can to effect change to protect their own interests. If they are not users of the system, they don’t know what the problems are. You do. This is very common place in political advocacy especially when dealing with a lot of money and with any threat of stakeholder accountability.
There’s an uprising of caregivers and people with disabilities challenging the system right now and voicing concerns, especially around the lack of stakeholder accountability. We’ve had enough! Autism Ontario is now a stakeholder that is on record excusing systematic discrimination of families and autistics in order to try and control the narrative and slow the pace of change, because what hundreds of families are fighting for right now both in court and politically, is stakeholder accountability to stop the very profiling and discrimination of families by support sector agencies/employees that Autism Ontario is excusing, and make sure that our kids and future generations don’t have to deal with such ignorance and disregard of human rights. Autism Ontario and other stakeholders are afraid of the storm they are responsible for creating.
It doesn’t matter how you decide advocate whether you take my word for it, Autism Ontario’s or the word of hundreds of other families that have had to fight tooth and nail because being nice very rarely works, the biggest takeaway from our plight in the system and advocacy within it as a family, is you record everything, and I mean everybody and everything! There is no quality control on most agency staff. It doesn’t matter whether you pick a fight or not, at some point as a result of how the system is built and the lack of accountability and checks and balances on staff within it, those recordings will help protect you when time comes and it will. Also request all your records and files on a bi-monthly basis. You have a right to know what these people are saying about you. You also have a right to correct those records, and make entries of your own. I was labelled in one call as being irate when I wasn’t. I was lucky I recorded that conversation to counter any profiling that was done on me as a caregiver.
You’re also allowed to have a bad day/week/month/year as a caregiver or as a person with a disability, and you’re allowed to feel frustrated, overwhelmed, and anxious as a result of the immense responsibility of dealing with a broken system of supports, a system that doesn’t value your input or your rights, that is set up to discriminate against you as a caregiver or a person with a disability, on top of what you are dealing with on a day to day basis. You are human, you are allowed to feel and express those feelings. If these people in the system can’t effectively deal with the frustrations many effected by autism – or any disability – have or even be empathetic to families, they should find another line of work and stop picking on – or threatening the services of vulnerable people. More importantly decide to CHANGE, and join the call for greater and more publicly accountable and independent oversight of all in the support sectors outside of self-regulating certification boards.
You also have human and constitutionally protected rights not to be discriminated against or services withheld or threatened because you are being illegally profiled in the system, or you’re exercising your rights under law. That’s wrong and so is Autism Ontario for excusing it, when they should be dead said against it, working with families and advocates to ensure greater oversight of support sector agencies and employees, and further the protection of vulnerable families, children seeking support, and committing to do better respecting the human rights of all they serve! Stakeholders shouldn’t put the blame for all of this on the shoulders of vulnerable moms, dads, or children who are having a significant time coping due to stakeholder ignorance. The time for that is at an end. We need change, and it’ll be up to stakeholders to decide to continue the ignorance displayed by Autism Ontario, or have an active seat at the table and acknowledge the significant human rights abuses and systemic discrimination as a result of the lack of accountability and effective oversight of support sector agencies and staff.