As National AccessAbility Week comes to an end, let us all reflect on the meaning of what true accessibility means to every one of us.

May 31st to June 6th is National AccessAbility Week in Canada. This is an important week of recognition that strives to celebrate the contributions of people with disabilities in Canada and to remove barriers and become more disability inclusive as a nation. This year's theme is "Building a Strong, Accessible Canada."

As a mom of a teen with a developmental disability, this topic is naturally close to my heart and subject to much reflection always, but especially this week. While I appreciate the advancements towards disability perception and access that we have made as a society in a relatively short time, I am still sharply aware of how far we must go as a society to truly be inclusive to all Canadians with disabilities.

My daughter Sophie is autistic and developmentally disabled. Her accessibility needs are not usually physical and not always immediately obvious. As a result, they are often not met or not met adequately enough for her to be able to safely access an event or venue. For example, her autism makes a new situation often very challenging and anxiety provoking, which drastically impacts her outward behaviour.

Many community events are understandably scheduled for a single and short amount time, for example an hour or two. Unfortunately, that time is not enough for her to become acclimated enough to enjoy the event - the scaffolding that she requires to be successful, the “on ramp” so to speak, is not long enough for her to be able to enjoy the event before it is over. To the organizers it may appear as distress, misbehaviour, attempt to flee, or other cues that she is not enjoying herself. To her in many situations it might simply mean that the fixed time set up of the event is preventing her to successfully engage.

The other main barrier is related to the outward presentation of her disability. As she becomes anxious or distressed, she may lash out or grab nearby participants, or usually me, her mother. This aggressive-seeming behaviour is a response to stress, panic or discomfort, but as she presents as a young adult woman, can be upsetting for others to witness. Naturally, I do not want her to accidentally hurt or scare another participant or cause damage to the property. So, out of this concern, we usually opt out. I realize this is the safest option, but the result is often sad regardless- while it might make sense logically, emotionally, feeling left out is the same.

And that brings us to accessibility and what it means to our family. When I receive an invitation from one of the many the adapted or disability-centred organizations I subscribe to, I scrutinize the listed event as to what their version of “accessible” may mean:

• Is it physical access to the building?
• Adapted materials?
• Modified expectations for participation?
• Alternative communication options?

Those are great of course and open doors for many participants. However, after the initial check, I then need to apply the “Sophie layer” of accessibility:

• How is the entrance to the event from a sensory perspective- is it a one-door room with a bottleneck of people and activity right at the threshold? (She may balk before even entering)
• How is the noise level?
• How bright are the lights?
• Is she expected to ease right into a main room and participate?
• Are there natural quiet corners and spaces from which she can observe until she is comfortable?
• Is there enough time for her to become comfortable before it is over? (i.e. is it worth our time/energy/commute/prep/scaffolding/packing/anxiety?)
• How many participants are expected?
• Will her possible “failure” be perceived/judged? (This is admittedly a mom worry and not a Sophie worry. However, I felt it was worthwhile to mention, as this might prevent some families from joining events as well)

I am aware this is a long list of items that may seem unrealistic to fulfill - due to time, budget and locations of events. As many caregivers of behaviourally and neurologically complex children, I understand all the reasons why it feels like asking for the impossible. However, as a parent of a teen who requires and will continue to require my full support to access and participate in the community, hearing the slogan “we are accessible!” sometimes makes my throat catch slightly. If it is accessible, why can’t we access it?

In the spirit of the National AccessAbility Week and as we continue to try to make Canada and all its beautiful spaces barrier free to all Canadians, let us all reflect on the meaning of what true accessibility means to every one of us.

To learn more about meaningfully including neurodiverse individuals in community spaces, see Accessibility Beyond the Ramp.

Article written by Ewa Sroslak