Rally Speech

When my child was struggling in school, it was blamed on his behaviour.  Him not writing anything down was said that he was refusing to do his work, due to personality. He was punished by being sent out into the hall for 45 min to try again, or stand outside in the hall, or to be yelled at for not following the instructions.

When assessments are not provided and diagnosis are delayed, children suffer. It’s traumatizing for the child and family. Meltdowns after school were heartbreaking while we waited and waited for an assessment. Kids cannot wait.

My child slipped through the cracks in the system, and it was me, who had to pull him out.

My child said to me one day that he thought school was abuse. When I told this to the professional, we were working with, he said, “for a kid like my son, he’s not that far off.”

I had to leave my employment because my child wasn’t getting the support he needed, and dealing and supporting my son, while he dealt with “the abuse” took a huge toll on our family.

A diagnosis of ADHD and learning disability for written expression should not be a traumatizing process. The government doesn’t want to spend $2,000-$3,000 on an assessment, but lost me as an employee paying a lot more taxes than the cost of assessment. Even from a financial point of view, it doesn’t make any sense. It’s a pay now or pay heavily later. Kids cannot wait.

Without a diagnosis, you don’t understand the WHY – and that is really dangerous.  Once we got a diagnosis, everything made sense. We could learn and provide supports that actually work. It is because of these two assessments that I was able to advocate for him and he is getting the targeted support he needs to access his education.

When people don’t understand why children are behaving the way they are, they get unnecessarily blamed, and so do their parents. All relationships become strained. All these theories start to be formulated. It becomes a blame game.

As a person who stutters I can also personally speak to this, as stuttering gets blamed on every little ridiculous thing we do or do not do. We don’t breathe right; we don’t chew our food right. As a child I never understood why I was different and therefore I had to guess, and as kids we guess wrong. We always think there is something wrong with us, that it’s our fault, that we aren’t good enough, and we are to blame for causing the pain in the people we see around us. We never even think for a second it is because of our genetics, or has something to do with what is lacking in our environment, or connected to the adults in our lives. Never.  Kids take all of the frowning faces, the looks of dismay, the energy of frustration and disappointment and they soak all of that in without question. It becomes a part of them, a part of their identity and their self-concept.

Assessments for children in schools are crucial. Kids cannot wait. Having trained teachers who are able to identify learning disabilities in those early years and for kids to be assessed is a human right. School should not be places of abuse for kids with learning disabilities. When schools are not properly assessing children, they are disabling them. They are creating the barriers and enforcing those barriers. Our kids have done nothing wrong and yet our children take the failures of the system, as their own.

Disability is a social construct, created and maintained by people. Living with a disability isn’t NEARLY as challenging as dealing with the ableism.

The Ministry of Education with their chronic underfunding, sets up this system to fail. It’s sets up the teachers, the EA’s and the children to fail. Discrimination all over this province in the education system, is rampant and shameful. One may think, contact the Ministry of Education. They may not be aware of the situation. OH! They know. In fact, they are ignoring me, and they ignore many other parents voicing their concerns about systemic issues. So, Ministry of Education, if you don’t respond to our concerns, our emails, our phone calls, we will take to the streets and rally. Our children have a voice and they will be heard. The abuse of power, lack of transparency and zero accountability need to come to an end.

Ministry of Education and to the province of BC, we will never stop advocating for our children.

Love Ableism, xoxo

Implicit ablest norms are a part of our culture and society, and they sometimes blossom out of loving intentions and kindness.

When I was growing up, I received the messages daily that I was to be protected. That I wasn’t to take any risks in life. That the expectations were lowered for me. What people thought I could handle and achieve was VERY much reduced.

As an 18-year-old I was hired by a family for contract hours for their disabled daughter.  She had a developmental disability and was non-speaking. She communicated in some sign language and we were a great fit. I don’t remember exactly what her disability was, but I remember she physically moved very slowly and had some mobility issues with her hands. Her mother did almost everything for her. If she was thirsty her mother would go into the fridge, get the juice jug, get the cup out of the cupboard and give her the drink. She was 16 years old and loved cooking shows. I remember thinking to myself, people have no idea what I have inside of me, I bet she feels the same. One day instead of me making us lunch, I asked her if she wanted to do it. You should have seen her eyes and how her face lit up. She was shaking. She nodded eagerly. I said ok…I’ll be outside on the deck, let me know if you need any help. (To be honest, I had no idea what she was going to put together. I would have been impressed with a P & J sandwich. It was a risk and I admit that I was nervous.) I occasionally would call to her through the open kitchen window, if she was ok, and her face was BEAMING, and she would give me the thumbs up. When she was done, she came out, opened the door and led me into the kitchen. She was shaking. I walked into the kitchen and on the table, I saw she had set up place mats, folded napkins with a spoon, knife and fork, and we each had a glass of milk ready for us on the table. On the plate she had cooked and served Kraft Dinner.  She was intensely shaking.  She was so excited and smiling so big, it was like…I thought her soul was going to shoot of her body. She kept writing to me, “Tell Mom, tell Mom”. All day, all she said was pointing to her message, “Tell Mom”. When her mother got home, I told her what she accomplished and she was shocked. I could see her processing everything…operating a stove unattended, spooning out the KD, carrying plates with food on it, etc. Her mom tried to cover up her anger. I could tell what had happened thrilled her and scared her at the same time.

 Her mother, out of love to protect and help her daughter was doing everything for her, when clearly, she was capable of so much more.

 People with disabilities have a right to fail. We have a right to get hurt. We have a right to suffer the typical aspects of life, just like everyone else. It’s almost like there is a belief that life is hard enough for you, I need to remove the typical life experiences from you, as you won’t be able to handle it. Life can be pretty shitty sometimes and as a disabled person, I have the right to experience all the suffering that anyone else experiences and learn and grow from it, and benefit from it just like anyone else. Behind the over protection, the lowered expectations, the decreased risks in life are ablest beliefs about disabled people.

 These are the beliefs that really disable us. It’s the air we breathe and we don’t even know it and as children you can’t put your finger on it or have words to understand it. You just feel that you don’t belong. You aren’t strong like everyone else.  We get the messages that we are weak, we can’t handle life, we need to be shielded from it. We are babied, overly shut out of the world that is harsh and not meant for us. Some people are bold and risk takers, some not so much. But yet disabled people are assumed that we are ALL not risk takers. We ALL want to be shielded. Our individuality is stripped and we are all given the same identity. It’s out of love, it’s well intentioned and it’s harmful and hurtful. We end up growing up in a fun house full of wonky mirrors that reflect back to us an altered version of our own self-identity.

Out of love and care for disabled people, what do we do FOR them or to protect them? What is the underlying belief system behind that? Ableism is so socially constructed in our society it is the implicit norms that we don’t see. Some we can clearly see. The lack of brail on the elevator buttons, no ramp or accessible parking spaces. But the invisible belief system is the invisible string theory of ableism built out of love, that connects us all, and something that needs intentional reflection in order to dismantle.  When society wraps all disabled people in bubble wrap and uses their disability as an excuse to not include them in life, it is a form of ableism, carved from fear and love.

When Ruth Bader Ginsburg talks about the sexism she experienced personally and those by other women breaking into the field, she talks about how men saw it was a way of keeping women out of the law profession as a way protecting women. She quoted Myra Bradwell who was denied admission to the bar in 1869, “According to our…English brothers it would be cruel to allow a woman to “embark upon the rough and troubled sea of actual legal practice. (Ginsburg, 2016, pg 71)

A book I read and loved was the book “Haben: The Deaf-Blind Woman who Conquered Harvard Law”. In her story telling she talks about how she was expected to do family chores just like every else. She talks about how she almost walked out in front of a moving train. She had the skills and ability to navigate around the streets after learning these skills from the school she was attending.

“There were so many signs….the vibrations through the ground…Blindness wasn’t the problem. Sighted people get distracted too. Many sighted people have been killed by trains. It’s about paying attention, not blindness. Does that make sense? …….Many people will blame my blindness, but those with disability literacy will recognize that carelessness created the danger.” (Girma, 2019, pg 118)

 Out of all of the people who close doors for disabled children, and shut them out, do we also want to be responsible for closing those doors…even if it’s out of love?

Ginsburg, Ruth Bader. 2018. My Own Words. New York, NY: Simon & Schuster.

Girma, Haben. 2019. Haben: the Deafblind woman who Conquered Harvard Law. New York, NY: Twelve.

The Scary Parent

To get us into the spooky spirit this week I present…

A true scary school tale in advocacy called The Scary Parent.

(I highly recommend you read this blog in the dark with a flashlight…or better yet, sneak into your kids fort and read it in there.)

I love spy movies.

Information is so valuable. People risk their lives for it.  The power people have because of information cannot be underestimated.  Information is knowledge and knowledge is POWER.

So, parents…what’s our power?

We know A LOT of information. (Insert evil laugh track)

We know A LOT.

There are Facebook groups out there where parents share stories, tips, resources and yes…education advocacy information.

This is terrifying news to school districts.

In these Facebook groups, policies are shared, laws and cases get posted, advocacy tips are offered and email examples are suggested. It’s pure group synergy.

There is only one rule about the Facebook group.

We don’t talk about the Facebook group.

Kidding…WE TALK ABOUT IT A LOT. (Rewind evil laugh track and press play again)

Now, here is the scary part. Not for the parents….the districts. We are invisible. They will never know if the parent walking into their office is a secret member, or not. If they have access to over 4,000 passionate parents. We travel incognito.  We are right in front of their eyes, and they don’t…even…know…it! (Feel free to make scary faces right now using your flashlight to heighten the scary blog affect.)

Here is the best part…

We are growing. Oh no!!! They say!

The scariest parent to the district, is an educated one. I am talking about being educated in how to navigate THE SYSTEM.

THE SYSTEM is a beast. It only responds to policy, law and complaints filed with external organizations.  

So, parents….

Go ahead.

Be that scary motherfucker you always wanted to be. Make THAT Facebook post. You go ahead and you fill out that intake form like nobodies’ business.

And then….

press…..

SEND.

Do you Trust me?

Trust has been a heavy topic on my mind for over two years now. My trust in the education system as a whole went diving out of the window on September 19th, 2019 and since then there has been a highway collision of trust breaking events. To be fair, there have also been some trust building events.

Let’s back up a bit.

I have had incidents occur that brought out the reality – teachers and principals are human. Even as parents we make mistakes with our children. We look back and wish we handled things differently. School staff make mistakes too. Harm was certainly not intended, but that is exactly what happened.  It sucks when they make a mistake and it double sucks when their mistake impacts and harms your child. However, in the past I was always met with integrity, honesty and genuine care.  How the education staff handled some pretty big “incidents” shall we call them, built my trust in the system. Shit happens, it’s not intended, and now we are going to fix it and make it right. They helped the healing process, for all.

How does your trust in the education system as a whole dictate your decisions regarding your child’s education? How you engage? Or not? How do you cope when you don’t trust the people in it?

I have to say, there are some amazing teachers my children have been connected to.  My children have had teachers who care, who go beyond their job descriptions, who connect, who inspire, and who in my mind…they were made for this profession. Everywhere you go, in education too, there is a patchwork of people full of passion, skill, knowledge, and unfortunately some who don’t know any better or just don’t give a fuck and have lost their way.

You don’t know who you are going to get, until you’ve gotten them.

Do you trust your child’s school?

How much?

100%?

50%?

0%?

Do you trust the school district and the administrative staff?

How much?

100%?

50%?

0%?

If you have a disabled child, trust in the education system is a sensitive topic. They system isn’t set up to build a trusting relationship. As parents of disabled children, we proceed with a high level of caution. Everyone else is diving into the ocean for a swim and we are sticking our baby toe in and waiting 6 hours to see what happens. It’s called experience.

It’s a balancing act. Sometimes you need to be so far up their ass, you know what they ate for lunch.

Other times, you can let yourself breath knowing that whatever happens, they have your child’s back.

Trusting “the system” or authority runs deep. Depending on our culture, history, sexual orientation, gender, disability, etc our trust levels are going to vary.

One of my take away learnings from a degree in human relations, is just how essential trust is to every human interaction. We filter our trust levels through every decision we make and every decision we choose not to make. Trust is the glue that connects us or disconnects us.

Some parents will comment that it concerns them how trusting their children are. “They will go with anyone…” Parents who have witnessed their children traumatized by a broken system, will feel crushed by how fast their kid grew up and how the innocence of childhood was stolen from them. “They are so cautious around other people now, and don’t trust anyone”.  

For all the days our children, pieces of our heart, leave our homes and enter schools…. we hope, we trust, that they will be ok. And when they are not and harm has occurred…it’s heartbreaking.

It takes a lot of time and effort to build trust, and it takes a moment to destroy it.

How do we risk trusting again? Children are no different. Do our children trust their school and the people in it? They need to heal. Will they risk trusting again? Or have they just learnt a valuable life lesson? Don’t trust anyone.

As staff administration enter district offices and school buildings in the morning…

As they drink their coffee and turn on their computers…

As they review their agenda and mentally prepare for their upcoming meetings for that day…

As teachers open their windows and gather their photocopies…

They are asking us…do you trust me?

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.

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.

Sex Education, Sexual Health and Disability

** Content notes: Sex, Sexual Assault

A disability advocate on twitter from the US said “If you talk about disability and you don’t talk about sex, you are treating us like we are children.”

******************

I have two stories to share and before I share those stories, I need to share this to preserve privacy.

I have lived in three different provinces in this country.

I have worked in both Deaf and hearing non-profit organizations in a variety of settings. (Supportive housing, independent housing, day programs, etc.)

I have worked in multiple school locations.

I have two really important stories to share.

Story #1

I knew a 15-year-old teenage girl with Down Syndrome who was raped by two boys from her high school and became pregnant from that rape. Her parents pulled her from school, and I never saw her again. I don’t want to explain our connection but when I heard the news, I felt such deep sadness and deep anger.

On a similar topic, but not connected to her rape, that school year her parents refused to sign a sex education health class participation form. They thought that because she has Down Syndrome, sex isn’t an issue in her life.  When I was in college for the Developmental Service Worker program, I had to take a class on abuse.  In the class we learned how predators choose people with disabilities to rape, and then will say that they consented. “They said yes,” is the rapist’s defense. What exactly did they say yes to? Then the parents have to take their disabled child to court and convince the court they are incapable of making decisions in order to have their child’s rapist arrested. Then their child, due to the court decision, will never be able to make any important decision regarding their life ever again. The abuse continues.

Story #2

This was another important person in my life. He was 16 years old. He was living in care. Like any healthy teenager he would masturbate.  However, he would become aggressive and frustrated.  They wanted to bring in a sex therapist to teach him to complete. Twelve professionals around a large table were in the meeting to discuss this plan with his mother and request her permission. His mother was stunned for the whole two-hour meeting. She thought because of the type of intellectual disability her son had, that his hormones would match, and she struggled accepting the content of the meeting. For the next two years his world shrunk. There were talks of removing him from school because he was pulling his pants down in the hallways and masturbating frequently. We couldn’t take him out in public because of his sexual behaviour. They were concerned someone would call the police.  He was under house arrest, essentially. It was devastating to watch this to happen to someone for something that was so natural and instinctive and human and with such a simple solution. It wasn’t until he was 18 when they were legally allowed to hire a sex therapist and his whole world changed.  He was able to have his private time and live a fulfilling life. What a disservice to this young man, to need to wait until he was 18 years old, and so life shaping.

People with developmental disabilities are often provided zero sexual health information or information that is not intended to really meet them where they are so they can find the information relative and useful. This is a complete disservice from our society.

People have different comfort levels when they talk about sex and sexual health.  People with disabilities should not have their sex lives be dependent on other people’s comfort levels. They deserve to feel sexual pleasure and have sexual protection.  

I have witnessed sexual health in education intended to teach people with disabilities, and I can tell you that those education moments were not designed for the community that they were teaching.  The sexual health teaching was a joke. It was checking off a box to say complete. We need to include sexual health but also focus beyond just sex and focus on relationship health.  Disability organizations supporting teenagers and adults through the lifespan have a responsibility to provide environments for romantic relationships to develop and grow through the lifespan. LBGTQIA2S+ included.

People with disabilities deserves better.

Over twenty years ago, I was in the Developmental Service Program at Humber College. Myself and another student each won an award for our academic accomplishments. We were awarded a free pass for a professional conference. We got a sneak peak into the professional world before graduation. I was listening to advocates already working in the system, discussing disability rights issues. I overheard one of the advocates say on our bus tour, one way to judge a disability non-profit organization that offers supportive housing, is to ask how many of their clients are married or in relationships. This particular organization boasted that they had six married couples living in supportive housing.

A friend of mine of Facebook a couple of years ago, shared an article. A woman when she reached her 100th birthday in Toronto was asked if she regrets anything about her life. Her response? She said, “I wish I had more sex. Well, it has been 30 years!”  Google that topic! She’s not the only one.

Humans have a natural sexual physiological drive. When we talk about disabilities and mental health, physical health, emotional health, social health, let’s not forget sexual health.  Let’s be honest. Sex is an important part of my life. How about you?

Twinkie Theory

What object is this?

What object is this?

Does anyone remember a Twinkie? Do they even still make these?

Cut it half down the center and it will look like this….

This is one point-of-view, one perspective.

Cut it length wise…

This is another point-of-view, another perspective.

If you looked at the last two pictures individually, you could easily think you are looking at completely different objects. When in fact, you are looking at the same twinkie. Two different perspectives, same object.

I have worked in public schools. I am also a parent/advocate in the school system. Two perspectives. Same Twinkie.

If you are ever in the middle of trying to bring two conflicting groups together…look for the Twinkie in their communication. The reason they are arguing in the first place, is because there is one!

I think educators and parents have a lot more in common than we think. I think we often feel we are looking at two different objects, when if fact we are looking at the same thing with sometimes different understandings of how to arrive at the same goal.  Sometimes. Sometimes we are looking at the same Twinkie.

Let’s larger the scope beyond parents of disabled children and front-line staff. There are many stakeholders in education. A mixed bouquet of perspectives. Do we all share a common goal?

So…when it comes to inclusive education…what is the Twinkie?

IEP Meetings in Public Education

Tis the season…

For some people there are four seasons in the year. For parents of children with disabilities we have a fifth season. It’s called IEP season.

An IEP is a lifeline to your child’s education. IEP stands for Individual Education Plan. The IEP has been undergoing some changes in recent years and the role of what inclusion means for all children has been evolving due to very passionate education advocates with very high disability literacy skills.

We live in a social stratification system. That means that our social structure is layered, a hierarchy, like bricks layered to form a wall. The layer you are in, will dictate your access in life. Not everyone has equal access to information, choices, safety, health care, education, relationships, etc. The list is a long one. Social stratification is almost universal, in all cultures. Those who have privileges don’t really notice it. It is weightless. The people who are not part of the privileged layers do feel it. It’s felt every single day. Heavy.  Taking up space in society when you are not part of societies cookie cutter pop out shape, can feel like a protest.  Advocacy is a part of daily life.

Parents play a key role in their child’s education. Ableism is blended into our society and chasing the dream of true inclusion in the classroom is often a dream that parents spend years chasing. The expectation of inclusion and anti-ableism is changing.  Parents and students have had enough of being excluded from the classroom, either physically, mentally or emotionally.  The struggles are real. There are wonderful stories out there and there are also horror stories.  The pandemic has brought to light the inequities of society even more and the inequities in education are no different.  To say this year has been stressful for many families with children who have disabilities is an understatement, while other children have flourished with the adaptive distant learning options.

It starts with the IEP, and in May and June, IEP meetings are all a buzz to review the year.  Emotions are high and advocates are in full swing. For those of you who are busy getting ready for this year’s seasonal planning, your advocacy efforts are a puzzle piece of a much larger picture.  You may not realize that your individual fight for your child’s rights to access an education, are part of a larger cause. The movement is growing. Anti-ableism is part of the diversity movement, and the movement is building, one IEP meeting at a time.