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| Image is a close up of a green chalkboard with two erasers and text "inclusion, or lack thereof". |
Recently, a picture of a lovely young woman with Downs
Syndrome circulated social media. The reason she was going viral, was because
her school had excluded her from the yearbook. Thankfully, after being called
out on their exclusion, they quickly said they would make it right, and reprint
the yearbooks with her included. But, that doesn't erase the fact that a disabled person
was hugely excluded. Sadly, this kind of thing happens every single day. The story really sent me down the wormhole,
thinking of all the times my son has been excluded at his elementary school,
and the pathetic pittance of supposed inclusion
that they offer.
Ableism is woven into the fibers of society. And, while many
people claim to accept disabilities on
the surface, true inclusion is still an afterthought. It often feels like there
is an attitude of 'be thankful for whatever you get' when it comes to what is
offered to the disabled community. Yes, laws have been passed that call for
inclusion, but that doesn't mean true inclusion has actually happened yet. We
could talk for hours about all the ways society still excludes disabled people,
but I'm going to rely on an area I'm well versed in; exclusion at school. Both
for my son, and for myself as a parent.
My son goes to a 'nice' school in a 'nice' neighborhood,
where everybody is 'nice' to your face, and the PTA does a lot of decorating and
event throwing. The staff is very 'nice'. The teachers in my son's AVLS* class
are wonderful, and very 'nice'. But, all of that being said, the ableism and
the exclusion still exists. It feels like it has been tossing us around from
the time we started at the school. My goal isn't to complain, but to educate people on some of the experiences
we have faced, because people who don't live with a disability themselves, or parent
a disabled child, often do not see the exclusion that happens on a regular
basis.
Hands down, one of the worst experiences at the school, was
with the former diagnostician. She gave my son an IQ test without my permission or knowledge; proceeded to argue with me
about his abilities, and then the abusive cherry on top, was that she suggested
we look into transitional homes when he was only 4.5 years old. Everything she
did presumed the incompetence of my
son, and insinuated I didn't understand my child's abilities. I stewed over
this horrible experience for quite a while, and finally had a conversation with
the principal (also very 'nice') who said he understood where I was coming
from, and I wasn't the first person to have a problem with this diagnostician;
but she was going to retire soon, so it shouldn't be a problem after that. Here
is a woman, who had power over the decisions regarding disabled children, who
was verbally controlling toward parents, and they just dealt with it. They knew about her behavior, and nothing was done
about it. How many lives of disabled children were harmed or held back because
of a single person's decisions? It's a frightening thought.
A couple of months after we started at the school, a flier
was sent home advertising a 'Mom and Son Night Out' held by the PTA. The event
was going to be at Main Event, with bowling, video games and pizza, at $25 a
head. My son does not have the physical ability to bowl, or play regular video
games, which is totally okay, but
leaves him with no available activities. Not to mention the sensory hell of a
place like Main Event is for Autistic and other neurodiverse people. And, I know my son was not the only child that
would have absolutely nothing to do in that unpleasant, overwhelming atmosphere. After
some careful thought, I sent a very nice email to the PTA president expressing
my concerns, and suggesting that maybe in the future, we could set up an event
that was more inclusive. I even offered some ideas and offered to help be a
disability consultant, or whatever it took, to help foster inclusion. She wrote
back that 'of course we should come, and just hang out!' and that they don't
have the resources to do 'anything
else'. But you know, she was so 'nice' about it. I'd like to point out that the
National PTA absolutely does have a Diversity
and Inclusion Policy for PTA events, which includes 'understanding and
embracing .... skills/abilities'.
Shortly after that, the PTA did have resources to put on multiple
events for a single child who got sick. I obviously never had resentment geared toward
that child, but I couldn't understand why they could apply passion and
resources for a single child, when
they had 'no resources' for including a
larger percent of the population that is disabled every day of the week?
Every year, each child in the AVLS program has what's called
an 'inclusion class', where they join their mainstreamed peers for specials*, class
parties and field trips. However, this attempt at inclusion has been meager at
best. I really don't remember much about the Kinder inclusion class at all. For
first grade, I found out half way through the year, that he was still in Kinder
class for gym, even though nobody included me on that decision making progress,
or even informed me until I pointed out he wasn't in any of the first grade PE
photos. So, that was another instance of being othered from his class-age
peers. Another situation that frustrated me, was that instead of emailing me
directly, the teacher for this inclusion class emailed the AVLS teacher, who
then forwarded it to me. Until, finally, sick of the run around, I asked if
there was a reason the mainstream teacher didn't contact me directly, and was
told "Well, we weren't sure if you would want that." Do I want to be
directly contacted and included by
the mainstream teacher? Yes, yes I do. Again, nobody brought it up or asked my
input, until I brought it up myself.
My son and I attended a field trip with his first grade 'inclusion
class' that was another painful experience that highlighted the lack of true
inclusion. I rode on the bus with my son, and fielded questions from children
about why he flapped and shrieked at certain moments. Which is fine with me,
I'm happy to help educate children and
normalizing stimming, especially when
others do not. But, nobody talked to him.
They talked to me about him. But,
they didn't talk to him. Nobody
called his name a single time at the field trip. I had one parent that I
already knew talk to me once, but otherwise, nobody introduced themselves to me.
I had to find a child willing to share their mini car with my son, so he could
enjoy riding around the track. Then, we just walked around by ourselves, being
ignored by everybody. Being an anxious Autistic person, it was hard to even
show up in the first place. But, watching my son be fully ignored by his 'inclusion
class' just drove a painful point home.
The school also runs a program within the AVLS group called Circle of Friends. Once a week, a group
of children (generally 4th/5th graders) come to the AVLS class and do some kind
project with the class. This is another supposed attempt at 'inclusion', but
ends up framed up as these typical
children doing something special for
the AVLS class. One of my son's teachers even made a comment saying 'They're just so patient with our kids'.
And, I know she doesn't mean to cause harm with her statement, but the root of
that belief lies in ableism. Treating another human being like a human being
doesn't deserve praise. It puts the typical kids in a helper status, not in a peer
status, like the name of the group would lead you to believe. This is another
example of not-actually-inclusion, that still others the children in the AVLS
class, and doesn't encourage true friendships.
At the end of year Kindergarten graduation ceremony in 2019,
my son was completely left out of the
little pamphlet that mentioned all the other children. No picture, no name,
nothing to indicate he was there or part of the grade. This is despite the fact
he was in the supposed 'inclusion classroom'. I did bring it up with the
school, and they swore it wouldn't happen again. Since there was no graduation
ceremony this year, because of Covid-19, I have no idea if any changes would have
actually been made, or if my child would have been included.
Naturally, we have all experienced a rough couple of months
with Covid-19. The AVLS class was the last one focused on by the school, and most
of us were just doing what we could while we waited for them to figure
something out for the class. Understandably, it's hard to transfer in person
activities to virtual for children who are used to very hands on activities.
Thankfully, we have lots of options in our home, but it felt like another
afterthought piled on top of everything else. I also never heard anything again
from the 'inclusion' teacher, no 'sorry we missed you guys, and have a great
summer'. Nothing, not a word. My son was never truly included in that mainstream class, he was just allowed to participate in certain circumstances.
These are largely a collection of small experiences, but
when you add them up, and experience them on a regular basis, it starts to wear
on your heart. My son is not able to fully express his view on the situations
yet, but knowing him as I do, and being able to read his body language and
behavior, I can tell when he feels comfortable, and when he doesn't. We are so
fortunate to live in an inclusion bubble with our family and friends, who
constantly are doing their best to support us and show my son love in his language. Every disabled person,
child or adult, deserves to feel supported and understood. One of the most
important, and easiest ways, you can do this is to talk to people with
disabilities, and interact with them. Respect their choices, the things they
say, and include them in your life. Teach your children about all the beautiful
differences in the world, including disabilities. I encourage you to look
around you and find all the ways that the disabled community is not included,
and do your part to work toward change.
AVLS: Academic and Vocational Life Skills class, which is a full time pull out classroom.
Specials: Classes including art, physical education, and music.
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