When the Bubble Bursts

We ride public transit as much as we can on the weekends in the warmer months of the year. Taking the train from our suburban community into the downtown core is an activity that brings our son joy and is something we can manage successfully during quiet times of the day. Our son will use a wheel chair when we are walking long distances. He is a social 14 year old and finds comfort in movement and any destination that promises a sweet treat is most often, motivation enough.

This Saturday morning’s goal: Leave by 9:30 am, ride to downtown, go for a brief walk on Stephen Ave., stop for a coffee and snack and back home by 11:00 am. 

As we boarded the train we were greeted with a loud voice, ‘Leo, my buddy, I’m so happy to see you’. An employee from our local grocery store comes by for some high fives, and in his words, ‘some smiles form the happiest guy around.’ Our son tires quickly of people in his space and often waves them away. This gentlemen didn’t get the wave to leave.

It is rare to go out into the community and not meet people that know Leo. Whether it is someone from school, an employee from a program he has attended or someone he has met while out in the community with his caregivers. 

We are reminded that he is simply unforgettable. Although not able to speak, his exaggerated waves, a bang on the window, grinning and humming at people will draw them in.

As if his body’s actions are saying, ‘I choose you to be my friend.’ Most people are eager to accept his offer. 

It is for all of these reasons, that what proceeded to happen took my breath away and sidelined me with disbelief, which then fueled my spirit with anger.

We were making the choice of which place to go for a coffee and treat. The two coffee shops we considered were busy and with a small entrance it would have been challenging to get our son in and out. In addition, large crowds and loud noises can be overstimulating for him, and cause a high level of anxiety which can result in him laying on the ground, crying and us unable to move him. We needed to avoid that!

We remembered a nearby hotel with a coffee shop and thought it was a great option with a large, open space and calm atmosphere. The four of us headed into the lobby of the downtown hotel to reach the Starbucks, adjacent to the lobby. It wasn’t anything out of the ordinary. A typical hotel lobby, a few guests working on their laptops. This lobby my husband and I have been through various times while working downtown.

Our son was calm, his body regulated and he was thrilled to be there. We set his chair to the side so he could walk around and see the fireplace, perhaps go say hi to the Baristas. Our seven year old daughter was eagerly telling us which cake pop flavor she was going to choose. My husband and daughter went to place our order.

Then the concierge looked towards us, then he looked at another man, who then came out from another area. They stared at us. As I followed my son close to ensure he wouldn’t disturb anyone and to assist him while walking, both men followed us pace by pace and didn’t take their eyes off of us. A hotel employee, perhaps the manager, came out from behind the check in desk and stood, feet firmly planted and legs in a wide stance with her arms crossed – and curtly asked ‘how can I help you?’ I almost laughed at her insolence. Casually I responded, ‘my son would like to say hi while we wait for our Starbucks.’ 

Then it hit me.

They want us to leave. We are making the staff of this hotel uncomfortable. They truly believe we don’t belong here. 

Do they think we will steal something? Do they think our son will hurt someone? Do they think he is dangerous? 

I forget. I choose to forget. Our focus, is always our son’s gifts. The kindness of others. The positive attention. The research. The community. Moving forward, one day at a time.

Then the bubble of hope bursts. People with disabilities are unfairly discriminated against every day. Of course we have always known this. When our son was five years old we were told he would not be allowed to attend his community school. The systemic discrimination in our education system is repulsive. The conversations we frequently have at home, of whether we fight decisions (that are made for him through policies) are frequent. Which fight is worth it? Which fight do we contact a lawyer and which fight do we let go….but this Saturday morning was unexpected.

Someone, a group of people, were uncomfortable, perhaps frightened, with our son’s presence. His smile, his graciousness, his joy – were all met with uncompromising exclusion.

We will take the day and return to our street, our neighbours, our friends that celebrate our son and help him live his best life. I do know we will continue to walk our path of hope. Today was our reminder that the path can get thick and I can’t leave my tools behind. My armour; my thick skin, my words, ready to make an impact on those that need to be educated. But, how unfair for him.