One of the things I talk about in Disability and Inclusive Communities is the demands on time that can come from disability:
Another way that our communities are not welcoming to those with disabilities is time. This is particularly true given the frantic pace that governs our modern lives. It’s a pace that is often exclusionary of individuals and families with disabilities, for a number of reasons.
Valuing people means taking the time to be truly present with them. Just as inclusion requires more than just being in a particular space, being present requires more than just being near someone for a short time. It requires slowing down and investing in the lives of those around us.*
I think that we’re really bad in our communities at taking the time to be truly present. But sometimes the demands are the result not of how others react, but are built into the demands of the schedule.
For instance, we drive Jameson to and from school. This isn’t because he can’t ride the bus. (He’s actually done it a handful of times with his sisters, and it’s always gone well.) Or because we’re afraid of how others will treat him. (The kids at his school are for the most part great; plus, his sisters are there to look out for him.) We do it because he’s not able at present to tell us about his day–what went well, what was hard, what he’s working on, etc… So we drive him so that we can talk with his aids in the morning and, more importantly, at the end of the day. That time is important to us in order to know how school is going for him.
And that time adds up. On a good day, it’s about 30 minutes extra in the morning, another 30 minutes in the afternoon. (I’m thinking of this issue because today the morning drop-off took an hour due to the roads and I squeaked into work only minutes before my first class began.) Each Wednesday, there’s another hour to take him to therapy. The 20 minutes each afternoon that we read with him. It used to take him an hour to eat each meal. That’s improved as his gotten older, but there are still lots of daily tasks that he’s not able to do on his own and thus need our time to help with: bathing, getting dressed, etc….
Even though individually these temporal demands are small, they are cumulative. I estimate at least an additional 10 hours a week of demands. That’s 10 hours that has to come out of something else.
This isn’t to complain. The time is worth it. All that daily time reading, for instance, has led to him being 12 pages away from finishing a collection of short stories by Beatrix Potter. All that time means he can read. (The significance of this accomplishment isn’t lost on me.) And I’m really fortunate to have a job with enough flexibility to make this extra time possible, even though it means I usually work for an hour or two each night after the kids go to bed. I know lots of families that don’t have that flexibility, which means the demands of time are even harder for them. And I know that other people with disabilities have temporal demands that we don’t. I have a friend that often relies on the Go!Bus since she can’t drive due to being blind. And sometimes the Go!Bus takes an hour or more to get her only 5 or 6 miles.
But this is all the more reason to be aware of the demands of time that disability can cause. If we want our communities to be welcoming, we need to think about how we approach time so as to not be exclusionary. (I give examples of such temporal exclusion in chapter 4 of my book.) But we also need to think about the demands on time that we may not notice and yet may disproportionately impact some.
*John Swinton also has some great things to say about time and disability in his Becoming Friends of Time. I confess that I too often think of time as the enemy to be conquered rather than a friend to partner with.