My Daughter Chose To Exclude Their Quadriplegic Brother From Her Wedding
If my own family chose to exclude their disabled family member, how can we ever expect society to do any better?
24K-Production, ozgurcankaya, IVASHstudio | Canva Today’s Instagram world has both been a blessing and a curse to the inclusion of Disabled People. It was widely understood that lack of inclusion was usually due to ignorance. An omission that people had little awareness of, as the result of a lack of connection to disabled people. But that's no longer the case — one excellent example of a Disabled Person promoting both her own as well as others’ inclusion is Misa on Wheels.
So when my son — a middle child, flanked by two older sisters and two younger sisters, ages 3 to 11 — became quadriplegic from a soccer collision at age 7, I set out to show society what it truly meant to be inclusive of a disabled person. This traumatic event, which had instantly made me a life-long caregiver, was going to at least serve some purpose.
Wherever I went, all five of my children went with me. Not all of which was intended to make a statement, since as a single mother, it was pretty much impossible to leave them home with anyone. These family trips and activities were a good bonding opportunity, and everyone seemed to enjoy their role of being part of such a close-knit team.
In terms of caregiving, the four sisters were never expected to participate in that though, as I wanted them to have a childhood as “unbothered” by his disability as possible. All I ever expected from them was inclusion in family events and regular companionship. I was anticipating that he would never have to experience the intense isolation other disabled people suffer from.
One thing I very much appreciated was the annual Rock Nation concert my then college-aged daughters would take him to. At the time hundreds of able-bodied folks were able to see and interact with him. It was super-cool for everyone when he would show off the standing function of his wheelchair. And he enjoyed those events immensely.
When the two older sisters settled and started their families, they did so nearby. By now three generations continued to have frequent and fun interactions, during the various family events. When the two younger ones took off for graduate school out of state, it was an experience all of us supported. Little did any of us know that they had planned to never live in-state again, precluding their ability to easily drop in with their brother from time to time, as they had been doing previously — a major change from everyone's expectation of contributing and being part of each others’ lives.
In turn, the older two sisters also started to reduce their contact with their disabled brother, though they would still invite him to family events. By then he had moved a few hours south to avoid the winter cold and was living in South Florida. When they were teens I would frequently take them there for mini vacations, yet now that their disabled brother lived there, little interest was shown by any of them, which was disappointing to me.
The Florida-based sisters started using their days off to travel out of state to see their two younger sisters for about two weeks every year. Their visits to their quadriplegic brother in South Florida had dwindled to just one weekend a year. I continued to frequently drive him to family events in North Florida like birthdays, Christmas, and the like, where he and I were still made to feel welcome under those circumstances.
Nevertheless, it slowly started to dawn on us, and it had become painfully clear that spending time with their quadriplegic brother and me as his caregiver and their mother had become more and more of a chore and burden to them. Fine if we presented ourselves on a silver platter by driving up to see them, but barely even considered if it involved their initiative or effort to come to visit him and me. Many excuses not to visit were made that no longer made any sense, such as an old dog they couldn't leave alone or take with them, which had since passed.
To top it off, imagine the dagger we felt when one of the out-of-state sisters announced she was planning to get married overseas. We were singled out in a WhatsApp group of the sister, her quadriplegic brother, and myself to learn that the four sisters en masse were planning to go overseas too with their significant others, and the family of the groom-to-be. Everyone was going to attend their wedding there, while we were excluded in multiple different ways:
- Quadriplegic wheelchair users are not able to travel by air, due to their special seating requirements to support their bodies that are provided by their wheelchairs, but they aren’t allowed to remain in their wheelchairs when they board like would be the case with other land-based transportation.
- Wheelchairs frequently get damaged in the cargo belly of the airplane, and Quadriplegic people frequently get dropped during transfers from the wheelchair onto a special aisle chair they barely fit on, to then spend 10 hours in a seat without the ability to get to and use the bathroom.
- The fairy-tale setting of a medieval castle chosen for the wedding location wasn't accessible.
- The only hotel in the village within walking distance was equally non-accessible, and due to the remote location of the castle, no other hotels were nearby.
- We had received no official invite at all as to the place or time. It was treated like a well-kept secret.
- Everyone going was tight-lipped and withheld any info regarding the wedding as well, even when asked about it.
- As nobody in the family bothered to inform us of any of the details, you can imagine the shock we experienced when we discovered the wedding listed on The Knot, detailing all of the above info.
To us, it was a double exclusion, one by the soon-to-be-wed sister, and secondly by all those in the family who never shared any info on what was being planned, or made any attempt to include us despite not being able to attend ourselves.
Whether the family was asked to not share any info regarding the wedding we were excluded from, or they felt awkward about it and decided to exclude us from their plans to attend the wedding as well, we will never know.
The result was the type of isolation disabled people often experience, due to lack of consideration in society in general. And when it happens in society, one can be a little more understanding that special considerations are accidentally omitted. But for the family — with all four sisters growing up in the presence of their quadriplegic brother, to deliberately exclude him and his caregiver mother, from such an important family event, was inconceivable.
This leads me to question that if my own family chooses not to include a disabled direct family member, how can we ever expect society to do any better? One would think the families of disabled people would want to set the example of including disabled family members in important family events.
How can we foster and live in a caring society, when those growing up with a disabled sibling didn’t even develop the required empathy to include him in such an important family event as a wedding? Even The Knot has a dedicated section with specific recommendations to include disabled family members in a wedding.
We can, and should do better, and families of the disabled should be at the forefront of setting the correct example to cultivate and support the inclusion of disabled people.
Faye Armitage is a Healthcare Economist and mother of five, whom she raised as a single parent. The catastrophic quadriplegia of her 7-year-old son from a soccer collision initially inspired her to be a stem cell research activist who was featured in the Orlando Sentinel above the fold, and mentioned in various other publications including the Wall Street Journal, before becoming a writer herself.