Accessible Death – Proposal

35th CSUN Assistive Technology Conference

March 9 to March 13, 2020
Anaheim Marriott
Anaheim, CA 92802

Summary

How will a family member with severe intellectual disabilities experience the death of a parent? These are our plans for accessible death.

Extended Summary

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

Inclusion

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.

The 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.

Home Funeral

Joe’s Dad, raised wild on a farm in Ireland, 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.

The Wake

“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

Supported

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.

The End

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.

Accessible Death – Songs

I’m putting together this play list for my wake and writing about my life while I am able. Time will come when I won’t have the strength. I want to make sure that my daughter Siobhan ( born with severe intellectual disabilities) understands what is happening and that she feels included in the process. I’ve used some songs she will recognize. In this way she’ll hopefully feel included. Accessible death.

Speaking of access, so far the playlist is only available within the Apple ecosystem. I apologize for this but it’s very difficult for me to do it any other way for now.  

https://music.apple.com/us/playlist/end-of-the-line/pl.u-N2kuNa1LZ

End of the Line Playlist

There’s No Business Like Show Business, Annie Get Your Gun soundtrack (remastered)

The original broadway production of the 1946 musical Annie Get Your Gun starring Ethel Merman saw the debut of this quintessential show tune. It is sung in the musical by members of Buffalo Bill’s Wild West Show in an attempt to persuade Annie Oakley to join the production. Siobhan loves the show. Who wouldn’t with catchy music and Ethel Merman. Written by Irving Berlin this song represents my love of theatre. I participated in amateur theater during school. Here, go wash these gels right away! “Clowns to the left of me, Jokers to the right, here I am, stuck in the middle with you.”

Trail of the Lonesome Pine, by Laurel And Hardy

The song is from Way Out West, a 1937 Laurel and Hardy feature. I love Laurel and Hardy films in which they displayed their masterful use of the medium, capped with surreal touches. Those are their voices in the recording. At some point Stan starts singing in a deep bass and Ollie corrects him with a mallet. Please see the movie for me. The tavern scene was rumored to have been filmed at Gower Gulch here in Hollywood which was not too far from my post production office at Hollywood and Vine. Though not true, I often though of them when I passed by that location. It was, however, a gathering spot for wannabe movie cowboys. John Wayne, Gene Autry, and Roy Rogers all got their start in the neighborhood, as did director John Ford. They’d show up in full cowboy regalia hoping to get a walk-on in a cowboy picture. This song represents my love of old movies.

Take Me Out To The Ball Game, Billy Joel, Live at Shea Stadium

Traditionally sung during the 7th inning stretch in a baseball game, this song reminds me of my dad who loved baseball and took me to see the Mets at Shea Stadium. The song was recorded during a concert at Shea in July 2008, not at a ball game. Somewhat unrelated but we went to the 1964 World’s Fair, also in Flushing Meadows. Yesterday’s tomorrow today. Futurama.

Reels: Down The Broom – The Donegal Reel – Boil The Breakfast Early, Kilfenora Ceili Fiddle Band

Ceili music from the ould sod. This represents my sister Una who did very well with competitive Irish dance. Way later her beautiful daughters also performed. Together with her husband Don they are an outstanding family. Ceili is a somewhat toned down version of Irish music approved of by the Church. Don calls it “the diddly dees.” Amazing how the Irish back east stick together and maintain a cohesive Irishness. If you wanted a piper to play at a funeral you’d just call a friend and Bob’s your uncle.

Under the Boardwalk, The Drifters

The group was a concept. All it was was a name, and various musicians shuffled through. Originally formed around Clyde McPhatter he was long gone from The Drifters by the time this 1964 hit charted. This song represents summers “down da shore” and also a small transistor radio I had that I’d play late at night listening to Cousin Brucie’s show on WABC New York. Featuring Motown, soul, pop, hard rock, and surf music the show brought it all together. I love do wop. “Yakety yak (don’t talk back!)”

All My Loving, Meet the Beatles, The Beatles

The music was a revelation for more people than me. I remember my Dad’s vocal reaction to my purchase of Meet the Beatles, an actual British product. He was still fighting the Irish revolution and all I wanted to do was listen to some music. In any event the record was pressed by Capitol in the good old USA. This song represents my love of The Beatles and the musical shift that took place after that. BTW, Apple Music is actually Bizarro Music. I searched for the American release Meet The Beatles and it insists on giving me With The Beatles, the UK album. Curses, foiled again!

Tomorrow Never Knows, Revolver, The Beatles

The song resulted from George Harrison’s meetings with Timothy Leary in California and the acid revolution. In a few short years The Beatles evolved from squeaky clean to hippies. I was too poor to be a hippy but we’ll get to that. My favorite story about this mind bending song was that they used a Leslie speaker in an unorthodox way for some of the vocals and Abbey Road Studios management sent them a memo warning them against it. Suddenly all the monkeys on all the islands were washing their fruit: I discovered that I no longer believed. I remember being dispatched with my Dad to fetch the car after mass on a glorious Easter Sunday and I asked him if he believed all that, referring to god and religion. After a long pause he answered  me deliberately in his very slow soft Ballyheigue drawl “I don’t know” with a lot of space around the words. Good man.

Soul Sacrifice, Santana, Live at the Woodstock Music and Arts Fair, 1969

Siri, turn it up! Okay, now playing Turn It Up by Anikdote. Siri, stop and go away. Siri: I’m sorry, I didn’t understand that, here are some websites with ads. 

Remember how I said I was too poor to be a hippy? I was preparing to pay my way through college and I had a job at a botanical drug company unloading trucks loaded with 300 lb bales of lavender, chamomile, ginger root, etc., and loading them with prepared botanicals. The weekend of Woodstock saw me sweating it out doing overtime. The inclusion of this song represents musical excellence and a way of life that had taken a big turn during the sixties.

Star Trek: Main Theme by Alexander Courage, Fred Steiner and the Royal Philharmonic Orchestra. 

Did you know that Gene Roddenberry, miffed at the royalties he was missing, wrote some lyrics and glued them onto the song so he’d get royalties too? Star Trek was a big conceptual leap and I just had to include the theme song. I identified most with Spock. Curious. Really, the whole thing was mind blowing. The show ended in 1969 and I largely stopped watching TV after that. I was done. Logically.

Hotel California by The Eagles 

The song presages my move to California in 1978. There are ideas that the song is about the Camarillo State Mental Hospital “You can check-out any time you like but you can never leave!” The Eagles say no but I prefer to think of it that way. In the early 80s I participated in groups going to Camarillo to speak with the inmates. I felt at home with the thorazine vibe.

Hooray For Hollywood, Salute to Hollywood, Boston Pops and John Williams 

The song was written by Richard A. Whiting, was first performed by Benny Goodman, and was featured in the 1937 movie Hollywood Hotel. It is the staple soundtrack element of any Academy Awards ceremony. The Academy Awards is recognition of excellent work voted on by union members of the locals that work on production. It represents labor, apropos of my writing this on Labor Day 2019. I include the song to mark my transition from film work in Manhattan to Hollywood and my work at the studios. Note the homage to There’s No Business Like Show Business in the latter part of the composition. 

Another Day of Sun, La La Land soundtrack 

This song drives home the masterfully choreographed over-the-top tour de force opening to the movie. The song represents my acclimatization to living in LA and coming to terms with what film work meant for me. Both Linda and I came to Hollywood around the same time, she for acting lessons, me for the movie biz. We knew each other socially but it wasn’t until I saw her sing in a show that I suddenly said she’s the one for me.

Oh Bondage Up Yours! by X-Ray Specs 

This song exemplified the type of music later played by DJ Agent Ava at KXLU who provided the punk soundtrack to which I cut film. Starting in 1984 Ava started out only playing demo tapes and some of it was glorious. I remember going to meet a friend to hear his friend, a Hawaiian music performer, and there was some time before the show. It was a venue with several performing spaces on Hollywood Boulevard near Vine. To kill time we wandered into a room with very few audience members and the band announced was X. I liked their approach but time came to move along and I remember having a few words with Exene Cervenka about our leaving her set. I later conformed the Super 8  on The Decline of Western Civilization for Penelope Spheeris. Super 8 was all she could afford and even that was expensive. After finding a backer she had it blown up. A lesson to me about using what’s at hand instead of postponing ’till perfection. This song stands for the bondage that studio work represented. Thirteen and a half hours a day, seven days a week followed by an indeterminate hiatus. Usually there was a long hiatus between the end of the year and the Cannes Film Festival but you could get a call any time – with no answering machines. After our plans were cancelled by overtime yet again Linda asked if I was a workaholic. As my Dad always said of me “he loves his job so much he’d lay down beside it.” Upon reading this Linda confirmed that I am a workaholic. Busted.

Burn Hollywood Burn (feat. Ice Cube & Big Daddy Kane) from Fear Of a Black Planet

Hip hop was brilliant. For a while. By this time I was burned out on my studio work and just plain living in LA and Linda was going back to school “for the third degree” and we played this album on repeat while she did her writing. After that we were to ankle to Ithaca to pick up the other member of our team.

The Dumbo Main Title 

This song represents a total shift in tone and focus. This is one of Siobhan’s favorite movies. She and I have watched it many times together. I often recite parts of it in the voices of the characters and she cracks up. All I have to say is “ovahstuffed haybags!” in the Brooklyn honk of Timothy Q. Mouse and it’s big fun. The song represents an otherworldliness with the goofy calliope music and the march cadence. Not the refined approach later used by Nino Rota this is brash and American.

Look Out For Mister Stork, Dumbo soundtrack

Mister Stork will find you if you are in China or County Cork. Indeed. Makes the whole thing seem ominous. The Stork is played by one of my favorites, Stirling Holloway. “Which one of you ladies is, ah, expecting?” Note that there are no credits for the singers. Walt had found a gold mine with characters that wouldn’t charge him to perform and he didn’t want to mess things up with credits. Besides, there are the secretses, my precious.

Love Shack, Cosmic Thing, the B-52’s 

The album we used to dance the baby out. Three days of labor is exhausting but the music kept us going. “Bang bang bang on the door, baby!” Love shack!

Isn’t She Lovely, Songs in the Key of Life, by the kind genius Stevie Wonder

The song announces the birth. We were exhausted, but we were okay. Team member three was here.

No Longer an Elephant / Dumbo’s Sadness / A Visit In the Night / Baby Mine, Dumbo soundtrack

The song is wrapped up with so much meaning for us.

“Little one, when you play;
Don’t you mind what they say.”

I believe that Siobhan was coming to terms with life in her first few months. Every evening she’d cry softly on my shoulder as I rocked her back and forth. Siobhan’s sadness. She later developed a worship of performing circus elephants. The song represents our fall from grace: she was no longer an elephant. But we quickly redeemed it with love in Baby Mine. 

Stay Awake, Julie Andrews, Mary Poppins Soundtrack

The song represents many things. Especially how we take care of each other. Siobhan loves Mary Poppins. If I recite the dialog to her she laughs. In the voice of Ellen, the Cockney maid: “Oo gets stuck with ’em? me! that’s oo!” Much mirth. Splendid splendid! I was in love with the movie since its release in 1964. Arriving at the theater in Fort Lee my dad was mad because of the wait line and wanted to go home. My Mom soothed him and we saw the movie. Don’t know what they made of it. The song represents our ongoing care of and love for Siobhan.

Fairytale of New York

This is the Irish music the Church wanted to protect us from. This brings me back to my misspent youth in New York, very sad in a cheerful way. You know, drunk. Ah, those winter nights in Spanish Harlem with the snow crunching under foot and the Johnny Walker and the neighbors with their cheap plastic curtains and the needles in their arrums. Every year end I’d give away compilations of holiday songs but this chune niver made the lisht. More’s the pity. A little jarring when juxtaposed with the Julie Andrews song but I hear she could curse a blue streak. “The gods have been angered by all the celebrate’n!”

End of the Line, The Traveling Wilburys, The Traveling Wilburys Vol. 1 (remastered)

What a stellar gathering. The song brings together Bob Dylan, George Harrison, Jeff Lynne, Roy Orbison and Tom Petty to sing me on my way to the end of the line. Thanks guys. One by one the stars wink out.

Battle Drums, Joe Hisiashi, Princess Mononoke Soundtrack

Siobhan is really interested in the Studio Ghibli films. Ponyo may be her favorite just now and My Friend Totoro is right up there with it. It’s interesting to see her dealing with the supernatural  elements. The music was created by amazing composer Joe Hisiashi. Taiko drumming in Japan is performed on a wide variety of drums, but in this piece powerful deep sounds are produced with large drums, sometimes know as ō-daiko. My power may have ebbed but there are still deep bass rumblings. Here’s to Siobhan, may she have a long life and always keep her spirit burning bright. Life is so fragile and I fear for her.

The End, The Beatles, Abbey Road

This song brings us almost full circle straight around again to the end. The end of The Beatles, the end of an era, and now the end of me. They had grown up and fled the nest before hardly any adults noticed. The hard work and grief was still ahead. Included because it’s a punchy song with their perennial theme of love and deeper meanings. Complicated guitar work with three of them each contributing interleaved guitar solos and some solid drum work by Ringo to send me off with the message that the love you take is equal to the love you make.

A Ghaoil, Leig Dhachaigh Gum Mhathair Mi, Julie Fowlis, Gach Segul / Every Story

Sung in Scots Gaelic. Here the singer tells us about a love who goes away, speaking to the loss we feel when someone departs. She leads the accompaniment with a hand pumped table organ which lends itself to the sadness. Sad and faraway now. The piece is included as a counterpoint to the more robust Beatles song. Help your audience see ahead like Temple Grandin with her circular well-lit cattle chutes or like the weenie in Disney’s theme park design. The Sleeping Beauty Castle at the end of Main Street Disneyland is the weenie, drawing you into the park and on your way to the magic. Don’t forget to veer off for The Tiki Room and say hello to Tiki Maynard. You might see Siobhan there. “Ahh, buenos días Seniorita, my siestas are getting chorter and chorter!”

Danny Boy, Celtic Women

I took Siobhan to see them. I’ll never give up on Siobhan, always seeking to expand her horizons. I wanted to introduce her to Irish music. Sometimes a live session will spur a love of something new. In this case no result, but you never know. The song is included because it is heart rendingly sad and takes the emotional part here usually played by a traditional Scotts piper at weddings and funerals. We had a piper at our wedding and great emotions were stirred up. Being out of reach of the Irish mafia I remember I contacted the piper through the studio musicians local in Hollywood. Will Rogers said that he loved Hollywood because you could hire a false front to make your false front look less false. In any event the song is included because it represents the loss felt by those who stay when one dies.