MPCFAOWMSWUAW
(an acronym, not a typo)
My son (aka DJ Bear), a friend, and I went to a benefit concert in Chicago last weekend for Cancer for College, an organization that provides college scholarships, medical debt relief, and educational experiences for cancer survivors. It was a great lineup of DJ’s, Will Ferrell, and Swedish House Mafia benefitting childhood cancer survivors. Bear is a big EDM fan, and his brother died from cancer in 2016, so the event was a great fit on many levels. My friend was in charge of the car snacks, and she will forevermore be the snack goddess. She introduced me to Hu Chocolate Bars, specifically the salty dark chocolate bar:
( https://hukitchen.com/products/hu-salty?variant=31140233347145 )
The concert made me reflect on all the extra thinking we do about going to an event with a person with a physical disability.
What is MPCFAOWMSWUAW?
Its an acronym for My Personal Checklist For An Outing With My Son Who Uses A Wheelchair. Why? Because in reality, almost every public outing has a SNAFU (Situation Normal, All Fouled Up) potential.
The majority of public spaces are not designed for his needs. This isn’t a gripe, as accessibility has improved, it’s presenting information of how I pre-plan our outings to avoid as many SNAFUs as possible. Some examples of difficulties off the top of my head:
-bad weather and sidewalk/street conditions (wheelchairs don’t do well in rain and snow)
-Theater productions (in Chicago it seems like the restrooms are always in the basement and packed during intermissions)
-commuter trains (make sure that conductor sees you on the platform!)
-ubers (order an extra big one and hoist that wheelchair in the back)
-restaurants (tight seating, stairs into the building, narrow hallways)
-movie theaters (no family or private restrooms)
Actually, the number one problem we face in public is restroom accessibility. My son is a teen male, and I am his mom. For safety reasons, in most public places it is ideal if he is accompanied to the restroom to avoid falls, potentially awkward/unsafe encounters, and ensure privacy. Bathroom floors can be wet and slippery and well-meaning people offer unrequested assistance. Sometimes strangers ask nosey questions, or even worse, offer to pray for his healing.
So a private restroom is ideal because I do not like going into the men’s room, nor does he appreciate going into the women's restroom. Easily accessible All-gender private restrooms or family restrooms solve this problem easily (Thank you, Wintrust Arena).
Sidenote: if you must pray for my son's “healing,” God can hear you without telling us that you are doing it or physically touching him. Unsolicited prayers from strangers really test my commitment to non-violence. I ball my fists and push down the scream, “He is not possessed by demons, you fool!” (Can you tell that it hits a nerve? Don’t be a stranger who does this, ever. It’s weird.)
Beyond public space issues, there is the concern of feeling vulnerable and navigating unfamiliar situations. We generally feel safe in public and it's not an overwhelming concern because we’ve had so much practice traveling through the years. However, we’ve also had our share of dicey and unfavorable situations, so here is a brief, incomplete list of some mental weapons and tactics I employ for outings:
SWAT (Special Weapons and Tactics)
Mentally preparing to be very visible. IMO, most of the time it is safer to be very visible than to try and “fit in”. So often the default can be to make ourselves try to blend to be safer - whether that's emotionally or physically. In many cases I find the opposite to be true with my son who is physically disabled - I make a decision to stand out and take up space.
Using a wheelchair. Piggybacking on the point about visibility, we use his wheelchair in public, even if it is for a shorter distance that he may be able to physically walk. The wheelchair is a visual cue to others that something is different. It actually makes it easier to go through the crowd, get in the door, etc. The wheelchair protects him from someone bumping into him and falling. In case of an emergency he is easier to evacuate.
Remember, people generally want to be seen as liked or good (I use this to my advantage in this situation!), so most are willing to help out if I look like I need space or an extra hand to open the door for us. In the past we have traveled downtown Chicago without a wheelchair, and people were not just unhelpful, but rude, because they could not see the “why” on why we were navigating a situation a certain way (like allowing my child to sit on public transportation when older people were present). The wheelchair is an obvious cue to people, good or bad, that we need more space, more help, and we are vulnerable.
Being intentional about what I am conveying as a chaperone/caregiver/parent. I use my instincts to decide how I want to show up in public. I have been told I have a great “resting b***h face.” I’ll take it. Sometimes looking unapproachable wards off any questionable interactions. Mostly, I'm simply the friendly midwestern mom accompanying her son. Being intentional also includes trying to communicate with Bear respectfully. I am fully aware that strangers take cues from me as to how to interact with my son.
Being prepared to handle inappropriate conversation and questions, and trying to handle them with discernment. (see future post “SMH”).
Searching up the public restroom situation.
Planning for parking. Do I have the disabled placard? Is it safer to park in a garage or in an open lot? Am I willing to pay extra to park nearby and avoid using the parking shuttle (it's not always straightforward with a wheelchair)?
When in unfamiliar parking garages, my default personality is “Resting B***h Face Woman” with a strict protocol of how to efficiently load into the car. Park wheelchair, remove backpack off of wheelchair, have him get in car while I am opening the trunk - heave wheelchair into trunk quickly and enter and lock and start car. Start driving if necessary before being situated.
Being Hands free. Fanny pack? Pockets? Keep both hands free to push the wheelchair.
Being okay with help and using perceived advantages. Obviously not at the expense of anyone else, but if something is offered that makes it easier for us, we take it.
If you want more insight on traveling with a wheelchair, I highly suggest Cory Lee (https://curbfreewithcorylee.com/ ) or Zach Anner (he’s on every social media platform). If you are shopping early for holiday gifts, here’s a link to some awesome Will Ferrell socks https://cancer-for-college.myshopify.com/products/will-ferrell-dj-set-fully-sublimated-socks Thanks for your time today.