Journey to Inclusion

This morning I was invited to be the Guest Speaker for the PTT Learning Center Seminar: Inclusive Education: Special Needs in the 21st Century. I thought I would share here…

I can still remember the day I got Teo’s diagnosis. Well, the first time anyway. I had taken a ferry from the British Virgin Islands to the US Virgin Islands to see the doctor. I knew something was happening with Teo. I just knew it. I was still completely shocked when she said, Autism. I left her office, with my chunky and cranky 17 month old boy. I took a taxi; jumped on another ferry; went through immigration and customs; loaded Teo back into my car and drove home- all in a fog. It was like I couldn’t think- and couldn’t stop thinking at the same time. It wasn’t until I got home and got Teo settled that I climbed into my shower and bawled like I had never bawled before- and honestly – don’t think I’ve cried like that ever since either.

What’s crazy about that reaction is that at the time, I honestly didn’t even know much about Autism. At that time, I had no idea how this would affect our lives and what this meant for my precious baby. I was simply devastated. If I knew then what I know now- well, yeah, my reaction would probably be the same.

You see, this journey my son has dragged me on, it is not an easy one. Not at all. You know what is easy, is throwing around buzz words like inclusion and acceptance and equality. We hear our leaders and lawmakers talk about being inclusive and not leaving anyone behind. Even school administrators – they’ll point to the one or two students with disabilities in their school and say, “oh yes, my school is inclusive.” 

Yup. It is easy to use the words – if inclusion was a noun. But you see, just like Teo’s autism journey, inclusion is hard and should never just be a noun – something we have (a ramp in a school building). If we want to talk about real inclusion – it needs to be about something we do (a verb)- constantly. And, unfortunately, it is not something that can happen at the snap of our fingers – no matter how many times we use the word.

It’s actually pretty easy to compare our (Teo’s and my) journey to the journey to inclusion. You see, at the beginning, when I was struggling to access services to help my boy, there wasn’t much. (still isn’t to be frank) After the initial diagnosis where everyone offered support, most of that drifted away. Friends who had children similar in age to Mateo, stopped inviting us to activities. I can even remember planning this elaborate party for Mateo’s birthday and only one child showed up. It was heartbreaking and so isolating. I was partly to blame for this too. It was difficult to take Mateo places. I had to worry about what he would do. Would he break something? How would people react to his behaviors? Soon, it was like we were totally excluded from everything. Hidden in our little world.

Mateo started getting therapies and I got to meet other parents like myself. I started getting involved with the Jamaica Autism Support Association. Mateo finally had some kids to be around and I had a little community too. It was a welcome change – but we were still very much segregated from society. 

Now, think about what parents in Belize have to go through when searching for a school for their child with a disability. So many are directed directly to Stella Maris without any thought of the possibilities and benefits to including them in ‘typical’ schools. It’s almost like we hear the word disability and just assume they can’t learn or that they have no value to add to our society so let’s just keep them all together in a little area. 

This, my friends, is what we call segregation. It’s almost like we want to lock away and hide our most vulnerable and ignore the fact that they are still valuable citizens. And just let me be clear. Segregation deprives ALL of us of the deep, profound experiences of shared humanity. If our regular kids aren’t exposed to those who are different to them, then we are not teaching them about acceptance and understanding and tolerance. They won’t learn from other’s experiences and this in no way prepares them for real life experiences. 

Now I know there are some teachers and parents listening right now who are thinking, “well, not my school.” You might be thinking of that one child with Down Syndrome that goes to your school or that one who was in a wheelchair or hearing impaired. This is wonderful. I’m glad we are evolving to the point now where some schools will accept those with disabilities- but does that make them truly inclusive?

If schools will accept a child  with a disability (I keep using the term child, because let’s face it, a truly inclusive high school in the country would be like a unicorn), how much do they work on making sure the child is really included?  Or are they still sitting in a corner, barely interacting with the students and teachers? Are they fully participating? 

According to Beth Foraker, “Inclusion requires the teacher to believe that ALL students have something to offer in the classroom and that we are really better off learning together.” I think it has to go one step further, the teachers, the school administrators , the parents – all have to believe this too and teach this to all students: That everyone has value and that everyone has something to add.  You see, inclusion is not about just physically being there – it is about ensuring everyone knows they BELONG there. THIS is how we become inclusive. This is how we create real social change for our country. 

I started Autism Belize April 2020 – less than 2 years ago. Since then I’ve had many compliment me on helping to bring awareness to Belize and about what I do for Mateo. Mostly, the compliments make me feel weird and fake  and I respond with some dorky or obnoxious comment – because that’s just me. But honestly, if I had stayed hidden away in my home with Teo or stuck to my little group of special needs parents – Teo would be missing so much of life. 

Access to community and meaningful education is a basic human right and Mateo – no matter what his disabilities are – deserves that – just as much as every other mothers’ sons and daughters. Just because he has a ‘hidden’ or ‘invisible disability’ doesn’t mean we should hide away and be invisible in society. No.

So instead, I had to make a conscious decision (and let me tell you as a protective mom, this wasn’t easy) to be very open about Mateo and his disability – for want of a better term, we were gonna have Disability Pride. This doesn’t mean that I will ignore all his struggles and deficits and pretend that it’s a different ability or something that makes him amazing and special. Because honestly, while my son is amazing and special – he struggles so much with so much. (remember I said autism is hard. Well, it bloody well is for him!) 

What I mean by Disability Pride is that I will be open about his successes, his struggles and challenges and yes, even his failures. I will talk about them. I will educate others. I will advocate, advocate, advocate. I am not willing to stay hidden or on the sidelines. And I know I speak for many parents when I say this, but we are not going to be satisfied with just hearing people use  the word inclusion or point to a ramp or a handicap bathroom and say they are accepting and making accommodations. Those are great and a small step forward, but they are not enough. 

My mom sent me a quote since today is World Kindness Day:  “Sometimes the best gift you can give someone is to simply include him or her.”

It made me smile. For years, that’s all I wanted for my son.  Then I read it again and it made me sad. Including someone shouldn’t be a gift – especially when we are talking about basic human rights- like the right to an education. Mateo’s journey continues to be challenging and I honestly don’t ever see it getting easier for him – but if we, as a society, could really work towards being inclusive? Then at least, I can smile knowing that, at least, he has a community that will support him and value him.  Isn’t that what we all want for our children?

I commend PTT Learning Center for organizing this presentation and starting this discussion. The fact that they are hosting this and having teacher trainings about disabilities shows us that they are truly committed to learning; that they want to be accepting and that they are making strides towards inclusion. Please just  remember that this is a continuous process that requires flexibility, collaboration and continuous education. BUT it will also greatly enrich the learning experience for everyone involved, and I firmly believe this, spark social change for our country.

Thank you.