Am I Disabled Enough?

For the non-disabled, this may be a new concept. Within some specific disability groups, there are hierarchy systems, which not all people like to acknowledge or talk about.  Due to my role in the past as a support group facilitator and my attendance at conferences, people whisper to me their question. I barely stutter, do I still belong? My disability is “mild” …can I attend?

I’ll be using my lens of stuttering to explain this.

There are people who stutter, who stutter on every word, or every second word and they can take many seconds to say one word. They stutter A LOT. The few people I have met, can take 30 seconds to say one word.

Then there are some people who sound completely fluent. You don’t even hear any stuttering, or sometimes you’ll hear pausing or what sounds like hesitating.

Then there is everyone on a sliding scale in between.

From the outside it is easier to assume the person who sounds like they barely stutter are the ones who have it easier in life and are barely impacted.

Here is the truth.

2 true stories as examples.

This person is completely fluent the whole time he is telling his story and it was a long one. Summary: he makes a six-figure salary, has been married for 25 years, has 3 children and has planned or tried to commit suicide over 33 times specifically because of his stuttering.

A woman, who barely stutters, tells me she never wants to marry and never wants to have children because she could never risk having a child who stutters. Life is hell. Her mother who also stutters, but who you would never know. Told her that she must never tell anyone she stutters. You must hide it at all cost.

These people live their lives as “covert stutterers”. They will change names to avoid stuttering, switch words constantly, and live in absolutely fear of being found out. Being discovered.

After 3 years in speech therapy in high school my stuttering was controllable enough that I became a covert stutterer and I told everyone that the speech therapy worked and that I was cured. I didn’t stutter anymore. Life was exhausting and filled with anxiety and fear every minute of the day.

I am someone where my stuttering varies. I can have some days or be in some situations where I am very fluent. Other days, my speech struggles. I never know what my speech is going to be like when I wake up in the morning. That unpredictability is hard.

When I am talking and my words are fluent there are two reasons. One – I am just talking and my words just happen to be fluent. Two- I am working really hard in my head and my body to produce fluent words and you have no idea how much work I am doing right now.

Because I can be fluent for a good chunk of the conversation and then just suddenly have a significant stutter and block on my words, the general public are very confused by this. Because of this, I get BIG reactions from people. If I had a dollar for every negative reaction in regards to my stuttering, I would be rinsing out my shampoo every morning with white wine.

The iceberg analogy is used a lot in the stuttering community. What you see, is just a fraction of the impacts and the amount of energy we put into overcoming barriers and managing our speech.

People who are more impacted by their disability are accepted very easily into the disability community. And you would be surprised how different disability communities have their social groups, and who the cool kids are. 😉 They don’t question if they are deaf enough, or autistic enough or do I stutter enough? Do I belong? It’s my perspective that the closer you are to the “typical” line, there is a whole set of different struggles that come with that.  I can sometimes pass as someone who isn’t disabled, when at the dentist or having a short conversation with a cashier. Have a taste of what “typical” feels like and then be bouncing back moments later to being viewed by others as very disabled. Growing up it was a struggle with identity that I have had to manage.

If someone identifies themselves as disabled, believe them. They may look like or sound like or appear “typical” to you. You have no idea how hard they are working to appear that way to you and what they are struggle with. Invisible disabilities are called invisible for a reason.  Questioning someone and doubting their experience on whether YOU think they are disabled enough to identify as disabled, is ablest. Believe them the first time. They know what they are talking about, and I would bet it was a journey for them to reach that point, to say those words.

…and Then You Take the House

Has anyone played the strategic card game called Hearts?

I won’t bore you with all of the rules. They are easily found on the internet. But the strategic part of the game is interesting.

The point is that you don’t want to be collecting cards of the suit “hearts”. They will add points under your name and you will lose if you collect too many. However, if any part of the game you realize that you are collecting too many hearts or that with the hand you were dealt, it is inevitable for you to be collecting hearts, you then switch your strategy to collect ALL the hearts. If you collect ALL of them, then you get zero points and every other player shoots up.

At the beginning of an advocacy path, it was painful to be collecting hearts. All of the failures of the system laid out in front of me.  I eventually realized that I am collecting hearts. What benefits the journey now, is to switch strategies and accept all of the hearts being landed in my lap.

The system I am advocating in, is a failed system. It’s broken. And instead of the emotional mess of seeing all of the failures of the system laid out in front of me, I now see it as evidence of all of the failures of the system. I have proof and details of exactly how the system fails and legislation that fails it. I have very detailed evidence laid out in front of me.  Even when the system fails, and I know it will, it’s all just one card that is part of my hand.

All I have is hearts.

For those advocates out there advocating in whatever broken system you are navigating… take a look at all of the evidence you have. Who else around you is also stuck in the same “game” you are in? What kind of hearts are they collecting?

There is a part in the movie oceans eleven that I think is appropriate.

“Because the house always wins. Play long enough, you never change the stakes, the house takes you. Unless, when that perfect hand comes along, you beg big and then you take the house.”

You are just not Disabled…yet!

For people who think policies on disability don’t affect them, if you are lucky to live long enough, this statement will be true: you’re just not disabled yet.

Let’s think about this…

You will eventually need glasses, or hearing aids, or canes or walkers. You will eventually be using closed captioning and have issues with accessibility getting into places that don’t have ramps. You will eventually have more doctor’s appointments to maintain your body. People may need speech therapy post stroke or deal with dementia or other age-related health issues.

If you are lucky enough, your goal in life is to get to a place where you are disabled. People who pay attention to their healthy eating, exercise regularly, reduce their stress, their goal is to reach and experience disability.

I guarantee you, when you arrive to that place in your life, you will absolutely still believe that your life has value and you will want to live.  Your family members will not love you any less.

As reported from others who reach this stage in life, they are shocked at the system they now need to navigate through and the barriers and oppression they suddenly find themselves or their loved ones in.

The government funds the education system for children with disabilities from a place of scarcity.  There are never enough speech-therapists, occupational therapists, assessments and learning supports. These are children with all of the potential in the world laid out in front of them, and this is what the government thinks of investing in them and their families. If kids are treated so poorly you can just image how you’ll be treated at the end of your life.

Now….who is interested in disability issues??

1 out of 4 Canadians identify as having 1 disability or more. That’s just the individual. Now let’s include the family members who are involved in support or advocacy. Why has the government not taken this on as a platform issue?

Well, for all those in government who don’t think disability is worthy of their time. Just wait…. you’ll get there eventually.

With Long COVID, the disability rate is going to rise. The time is now. Disability issues are everyone issues.

Let’s give all kids a chance. Fund schools and systemically design them for inclusion and success.

We will all benefit from anti-ableism policy development at the government level.

https://www.ldac-acta.ca/canadian-survey-on-disability-reports-a-demographic-employment-and-income-profile-of-canadians-with-disabilities-aged-15-years-and-over-2017/#:~:text=In%202017%2C%20one%20in%20five,aged%2075%20years%20and%20over.

Are Lawsuits the Only Chance Parents Have in Shaping the Education System?

If feels like we have tried everything else…

We have another school year upon us and everyone’s anxiety around a new school are compounded this year, for so many reasons.  More so, for parents of disabled children.

Advocacy for the new year is already in full swing, and who are we kidding, advocacy for this year -started last year!

When things feel out of control, it is important to remember that we do have a foundation of some education law to stand on.  We can push.

First, we have The UNESCO Salamanca Statement

“In June 1994 representatives of 92 governments and 25 international organisations formed the World Conference on Special Needs Education, held in Salamanca, Spain. They agreed a dynamic new Statement on the education of all disabled children, which called for inclusion to be the norm. In addition, the Conference adopted a new Framework for Action, the guiding principle of which is that ordinary schools should accommodate all children, regardless of their physical, intellectual, social, emotional, linguistic or other conditions. All educational policies, says the Framework, should stipulate that disabled children attend the neighbourhood school ‘that would be attended if the child did not have a disability.”

Canada was one of these 92 governments. For all sorts of info on this – http://www.csie.org.uk/inclusion/unesco-salamanca.shtml

Now that we have established that exclusion is actually illegal, and all of our children are legally allowed to attend their local school, let’s move onto Loco Parentis.

Second, we have Loco Parentis.

What does Loco Parentis mean?

It means that LEGALLY teachers are expected to behave like a “careful parent”.

“Traditionally, the teacher was considered to be acting in loco parentis. This means that in relation to the student, the teacher stands in the position of a caring, responsible parent and unofficial guardian. This concept allows the teacher some of the privileges of a parent but also brings with it added responsibilities for the protection of pupils. Thus, a teacher could be liable for injury or damages to a pupil if the teacher’s conduct falls below the standard of care deemed to be necessary under the given circumstances. In some instances, the duty of care owed by the teacher may exceed that of the parent if special knowledge makes the teacher aware of dangers that the parent might not appreciate.” – https://www.teachers.ab.ca/News%20Room/Publications/Substitute%20Teachers/Pages/Chapter%204.aspx

https://home.cc.umanitoba.ca/~wallind/chapterfour5.html

http://www.thecharterrules.ca/resources/sitch_and_mccoubrey_students_rights.pdf

https://open.library.ubc.ca/media/stream/pdf/831/1.0077325/1

The courts continuously have tossed lawsuits against school districts who do not want the system to be flooded by parents’ ability to sue schools, especially around education malpractice. https://core.ac.uk/download/pdf/56369776.pdf

Is the common law of Loco Parentis our way in???

I have such a respect for teachers. They are not given all of the education that is required of them to fulfill the expectations demanded by society, and then they are working in a failing system on stage in front of an audience. Does anyone else want to sign up for this? No thank you!

I have many friends who are teachers and EA’s. I was an EA! Working in education is not easy. However, I would like to add that there is a HUGE sliding scale of ability, skill and knowledge amongst education staff. There are the most AMAZING teachers out there and then there are some people who just shock me.

Some people don’t even know the harm they create. Some of it is systemic and functioning in an ablest society. The education system is very sick. It operates from a place of scarcity, defense and secrecy.

Every time school districts get away with harming children, and it usually takes a team, intentional or not, it reinforces that they are untouchable.

So, how can we use common law “Loco Parentis” to aid in our advocacy?

It’s sad to say, but it may take a lawsuit around this topic to get everyone’s attention. If anyone is interested in this path there are pro bono lawyers out there you may want to consider.

When communicating with school districts, it’s all about getting their attention with legal language.

For example: “Your suggestion would exclude my child from school and they would not be able to access their education.” – human rights complaint

“How does the harm my child has experienced because of my child’s team fall under the supreme court decision around loco parentis?”

When you start quoting policy and law, things tend to take a quick turn. Your school district will have a tab on their main website with all of the policies and bylaws, sometimes under the Board section. The school boards are responsible for student achievement and MONITORING student achievement. Always be aware that each school district has a process to appeal decisions to the school board.  

For those who are sad at the realization that advocating for your child sometimes require that you become a self taught lawyer, I offer you this….

http://www.speakingupbc.com/2021/08/06/the-non-death-loss-for-parents-of-disabled-children-in-education-all-over-this-province/

I encourage you to look through my education advocacy pages and I have added a new Education Law page. Work in progress! If any parent reading this would like to send me more education law info or links, I will be happy to add.

The scariest situation for a school district, is a parent who knows their rights. Every time you advocate for your own child, you open the door for someone else. We are not alone.