35th CSUN Assistive Technology Conference
March 9 to March 13, 2020
Anaheim, CA 92802
How will a family member with severe intellectual disabilities experience the death of a parent? These are our plans for accessible death.
Nothing Is Forever
“Hello, I must be going.
I came to say, I cannot stay, I must be going.
I’ll stay a week or two,
I’ll stay the summer through,
but I am telling you,
I must be going.” Captain Spaulding, Animal Crackers
We want to make sure that Siobhan understands what is happening and feels included in the process. A home wake will hopefully give her time to take it all in. We will include some of her favorite music for the wake playlist. We’ve purchased a family burial plot at a cemetery one mile from our house. We have plans for an accessible headstone.
“Higitus Figitus zumbabazing,
I want your attention ev’rything!
We’re packing to leave come on let’s go,
books are always first you know!”
Merlin, Disney’s Sword in the Stone
In this case it’s the headstone that comes first. Siobhan communicates using the Picture Exchange Communications System and cannot read. Symbols are her vocabulary. A headstone with lots of text won’t work for her. The fact is it doesn’t work for others either. The finished piece has to have impact from a distance. I worked with someone who was tasked with designing banners to be mounted on light poles. When I saw the design on computer with lots of small cursive text I was sure it would not work. Indeed, everyone complained about how you couldn’t read the banners fifteen feet up in the air. All we needed was the event, place, date, and time. What we got was a jumble. The headstone will be designed with our etched photos in the form of the symbols Siobhan uses every day. Keeping it simple will be a challenge.
Introducing the Concept
Siobhan will have to be introduced to the headstone very gently. If we overdo an introduction to something new she instinctively backs up, sits down like a mule you want loaded on a boat, and that’s that. Perhaps we’ll try some drive-by visits to the burial plot with no comments at first. Just a look and then drive away. Maybe a paper mock-up of the headstone mounted on foam core can be used before committing to stone. Perhaps this mock-up can be experimented with at home at first. The important idea is to make this a regular part of the scenery well before the need. Since she loves having a purposeful job to do we might introduce her to visiting the grave with a shamrock symbol for St. Patrick’s Day and a Santa symbol for Winter Solstice and on through the year. We can use some Velcro affixed to the headstone so she can just add the symbols as needed. In this way she’ll have a place to go and will hopefully feel included. Or maybe it will be like Joe’s family visits taking the grave decorations to his grandmother’s plot. He usually waited in the car sulking. The point is to have a marker to denote the spot when Siobhan asks for us.
The Burial Plot
We asked for a site next to a paved roadway. The site we chose affords maximum accessibility in all senses of the word. When picking the location we were shown three plots. The idea of being buried under a shady tree is engrained in thinking about locations. Two of them were in some shade but were all jumbled up with roots among other plots placed at what seemed to be odd angles. Some may see cool shady spots, all we saw was tripping hazards. The third plot is just right, out in full sun with some palm trees in the mid distance and the Santa Monica mountains in the far distance. It will be well lit by the sun most any day of the year. A nice touch is a headstone on a plot in the row behind ours that says “Mother, Mary A. Allen, March 14, 1921, At Rest.” Glad to know she at last got a moment of rest for herself. The graveyard is a mile from our house and is on the bus line. The plot is a short walk from the entrance right next to a paved drive and is flat and level. With the exception of a low curb the site is as physically accessible as we can get.
Joe’s Dad, raised wild on a farm in Ballyheigue, told stories of making mischief at wakes like hiding in the thatch and spitting down at the women saying the rosary until one of them remarked that it must be raining out. Great craic! A home wake is as natural as any other phase of life. Except in this country. Bodies are not poisonous. They can be cared for the same as an infant: washed and dried and displayed for family and friends to experience.
“It used to be the custom in most Celtic countries in Europe for mourners to keep watch or vigil over their dead until they were buried — this was called a “wake”. This is still common in Ireland and North-western Scotland.” Wikipedia
Being supported by family means a lot to Siobhan. She thrives when people are around and visiting. Hopefully the wake will provide her with some time and space to get used to the idea while feeling supported. It need not last very long, a few hours will do.
Customizing The Experience
What will a wake look like in your family? Will there be music and pictures of the deceased? Dancing? How will this be made accessible to the whole family? Will everyone feel included? There’s some work to do to make that happen. Playlists of music provide a good place to start. Siobhan has definite tastes in music. She likes classical and show tunes and The Beatles and movie music. Including her favorites is another inclusionary point. To try out the concept Joe has created a playlist for himself. Highly autobiographical, the list includes some pieces familiar to Siobhan. She also loves to look at photos of people in the places to which we’ve traveled, or outings with friends, and with her dog. Pictures can play in rotation on display screens.
The Interment Ceremony
At the end of the wake we will see the body off for cremation and the mourners will disperse. When all is ready there will be another gathering, this time at the cemetery. With everyone gathered at graveside we will encourage people to make brief comments. The grave will be open and the urn will be placed with symbols to add in. We will keep it light and have some additional symbols on hand to affix to the headstone to show Siobhan how to do it and help her to join in. Then a meal for everyone.
And so we hopefully have provided a few ideas for making death accessible for someone who has severe intellectual disabilities. Methods can be employed to make the process as accessible as possible for everyone. Be sure you account for the needs of friends and family. If you are someone or are assisting someone with hearing, vision, or motor issues why not plan ahead and make sure there will be signing and captioning, audio description and tactile graphics, and easy access.
We must set aside our distaste for death in order to plan ahead to make sure that when the time comes we will have a calm orderly process. Our plans won’t work for everyone. Make your own plans. Make death accessible.
To discuss this I’m on Twitter @AccessibleJoe.