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By Gwendolyn Jones

Trigger warning:  I’m raw and pissed off and talk about ableist nonsense hurting kids.

Like many people around the United Kingdom and the world, I went to London last week to pay my respects to the queen.  I also brought my husband and 3 of my children with me.  My husband is a Royalist.  As an American ex-pat, my reasons were a bit different.  I have a lot of respect for the queen as a role model for service.  I also see her as a full person with flaws.  But, I admire her dedication to her British subjects.  We also, as a family, are huge history buffs.  We want our children to acknowledge and experience the history they are living.  So, we got up at 4 am on Thursday to join the queue.

I’m so grateful for accessibility

My family has many hidden disabilities and neurodivergence.  Just in my body, I have fibromyalgia, CFS and ADHD.  Wednesday evening, I slipped and banged my knee so I needed a cane as well.  I use this more than people think, but it is rarely seen if you aren’t in my little town.  There was a time when accessing important events like this was off the table for me and my family.  I am so grateful that the world has woken up to a huge population that needs equity in access.  Remember, equality is when everyone gets the same.  Equity is when everyone gets what they need.  My family needed a different queue.  Our desire and dedication matched those who could stand in the queue. Our ability did not.

So, we went through the accessibility queue.  Everyone there was so lovely.  No one asked us to explain anything.  They gave us our wristbands and ushered us through.  Because we were there so early and on a weekday, we had no wait.  This surprised us as we had expected at least 3 or 4 hours.  But, we were grateful to experience the reverence of the room in Westminster.  It was palpable.  When you are sensory sensitive, you feel the weight and intensity of the space to such a high degree.  We paid our respects, bowed our heads at the coffin, and left with big feelings.  I am so grateful that we were given the opportunity to access a moment that was so special.

As we left as a family, my son was visibly moved.  He described the “weird” feeling in the room.  He said that his body didn’t want to move for once and that he couldn’t find words if he wanted to at that moment to speak.  This is coming from the kid who sees the world as his obstacle course and has a body that moves in his sleep.  We talked about reverence and solemnity and respect.  My daughters joined in discussing the feelings they felt and how surprised they were by them.  Even my ultra sarcastic jokester was moved to silence…a rare state.  So, we left and spent the day in London learning about history, talking about politics and appreciating our time together.

It always starts with a joke

Almost immediately after leaving Westminster, we started getting texts.  We were on BBC Breakfast!  That was so cool.  The kids felt famous and we felt grateful that we said what we were actually doing when we called in the kids rather than saying they were sick.  Then came the question…. “Why is Gwen using a cane?”

Now, I’m happy to share about my disability.  I teach seminars on Hidden Disabilities and use many of my own experiences to help others understand how to support people like me in the workplace.  So, I happily say, “There are times when I need it and times that I don’t.  I often wear a brace somewhere depending on what body part chooses to hurt that day.  Today, I needed the cane or there was no way I was getting through London.”

“Sure she needed the cane…”  That’s where it starts… with a joke.  I do feel the need to point out that my close friends know that I have thick skin and we have a very healthy banter between us.  Banter requires consent.  My friends have that consent.  And…. the line sometimes gets crossed.  But, I feel able and willing to challenge and be challenged when this happens and they are able and willing to receive it.

We posted pictures and shared our stories about being a part of history.  The jokes came from friends and were received with a giggle.  Then, things took a turn.

Who do you think you are?

Like anyone, I have circles of friends.  I have my inner circle which is quite small.  Then, like ripples when you throw a stone in a pond, I allow access to my life at different levels.  The further out the ripple, the more entitled people felt to question or judge my family.

I got asked how long we stood in the queue.  Apparently, it’s some sort of status symbol or sign of dedication to have a high number.  When I tell people it took less than an hour, somehow my experience is diminished in their eyes.  The effort we took making the journey down or even our plan to stay as long as we could expecting a few hours was irrelevant to them.  Whatever, I didn’t go down for the praise.  I went because my family wanted to experience history.

Next came the flood of really personal and inappropriate questions.  Why did you need that queue?  Why did your kids?  Couldn’t you have waited your turn like normal people?  Who do you think you are?

With loaded questions come judgment statements.  That queue is for people who are REALLY disabled.  You are taking the proverbial.  All kids hate waiting in line.  Your kids aren’t special that way.  Well, you walked there.  So, obviously, you were fine.  If I had gone down, I would have actually waited out of respect rather than skipping the queue.  It must not have been that important to you.

Now, I have two words going through my head to say back to these people, but I held my tongue.  I instead checked in and did my best to be a good ally and an advocate for myself and to model what it is I value.  Then, I got hit in my pain point.  This started being said around and to my kids.  Mamma bear wanted to come out.

My kids felt ashamed.  They felt that either they had to explain personal information about why things were difficult or they had to be embarrassed because their needs are as such that this world is not set up for their success.  They each reacted differently.  Kid 1 smiled and took it in and tried to play it off whilst ripping herself apart inside.  Kid 2 changed the subject but let the thoughts of self-doubt and negative self-talk take over his brain. This later led to a massive meltdown that was painful to manage. Kid 3, my mini-me, took a more direct approach.  She has not yet honed the diplomacy side of self-advocacy and instead goes for the jugular calling people out as ableists and preaching equity from a place of outrage and attempted education.   She’s 12 and a work in progress… but a good one.   She still came home feeling huge negative feelings about herself and her family.

So, as a family, we process.  We discuss.  We talk about our internalised neurodiversity negativity which is the part of feeling and being told you are wrong in so many spaces.  We ramp up and empower some whilst honing and fine-tuning others.  We heal from trauma as a family that we don’t deserve all because entitled people encroach on our mental well-being out of a need to feel superior.  Man, screw them.

Accessibility is a right.  We all need to watch our words.

Accessibility is not a nice thing to do.  It’s not charity for those who are lesser than the majority.  It is a legal and ethical right and duty provided to those who need it.  One should NEVER feel embarrassed or ashamed or humiliated for having a different life experience.

I am aware that conversations have been had about me without me in the room to defend myself.  I’m also aware that whilst I could not give less of a you-know-what about what people say about me in this instance, other people do.  These people include my children.

When hateful rhetoric around disabilities…or well…anything… is spewed, it is usually loud and obnoxious and said with a voice of great authority from a person who either doesn’t know what they are talking about or is full of conscious or unconscious bias and hate.  Who around that person is listening?  Who around that person may deny themselves help or access out of fear of vulgar vitriol that makes them the target?  Also, who in the room feels emboldened to lean into their ignorance based on the confirmation bias or role modelling happening?  Kids?  Vulnerable people?  Jerks?  Anyone?  How is this voice holding up and shaping their community?

I often hear the ridiculous defence when people are being ableist of, “Well, I have a right to my opinion.”  Sure!  Have whatever opinion you want.  However, if you really own it, then you own the repercussions of sharing it.  You do not exist in a vacuum with your opinion.  The other one I hear is, “Well, I didn’t know you/they were disabled.”  Exactly.  You don’t know.  And someone else’s medical history is frankly none of your damned business.  You are not entitled to information simply because you are curious.  You also don’t become absolved of the repercussions of your words simply because they are steeped in ignorance.

So, what’s the lesson?

It has been a while since I have been the target of ableism.  I’m not afraid to check in and call out, depending on what’s appropriate.  My first lesson is to remember that the work is nowhere near finished.  Much has been done.  The very existence of an accessibility queue is huge progress.  But, for me and people of other protected classes, we often get a stark reminder of the ignorance and entitlement that exists in the world of the privileged.

I need to check my privilege in other areas and find when my unconscious bias comes through.  We all make judgments.  I’m not going to pretend that I am somehow judgment free.  I know of times in my life when ignorance came from me and it hurt others.  The work on myself never ends.  But, knowing that I could possibly make someone else feel like this sure is motivation to keep going with it.

I have work to do with my kids.  Trauma from being neurodiverse is real.  As much as I try to educate or empower or help them become resilient, it will happen to them.  They are strong.  But, they are strong because they have been tested over and over again by people who are dismissive of their life experiences or judge them by their worst moments or a list of traits.  So, if they need armour, fine.  I need to make sure it is the right armour and that they know what tool or weapon to use to defend themselves.

The final lesson is about education.  Ignorance is simply a lack of correct information.  When I get past the anger and the hurt, I see a strong need for education.  Privileged people often are ignorant simply because they have not been challenged.  There is a lack of awareness of a need for awareness.  So, I can get mad at it…and I do. I can also see the need to advocate for education and educate others.  I genuinely believe most people do not want to be hateful and harmful.  Fragility is real and is painful and hard to get past.  But, with the right voice, the right intent and the right balance of holding other people accountable for their actions and meeting people where they are with compassion and better information, the work can continue to make the world a more equitable place.