Carpenteria californica, bush anemone

Episode 27 “New Blog / Throwback Episode 4: Help”

As my limitations from multiple sclerosis increase, I’ve had to get comfortable asking for assistance.  Asking for and accepting help is one of the secrets of effective people. Or so I’m told.

Winter rolls on. I continue to produce content and work on the site daily.  Being with family and experiencing multiple sclerosis or disability can be difficult to manage, and pressure only increases during the holiday.

Papa’s Got A Brand New Blog

I’ve added a blog to the site, and I discuss my first post, about a disabled woman’s social isolation.  Episode 4, “Help” from the pre-history, chronicles never giving up, in an echo of Episode 25.

I never stop reviewing records

I am reviewing Marshall Allen Volcano Quartet’s CD Volcano Swing. Marshall Allen was part of the Sun Ra Arkestra and this band is a continuation of that.  They were in London in 2011 when a volcano exploded in Iceland, grounding all flights. The band took a three-day residency at Cafe Oto in North London.

They stopped by the BBC Radio to promote the gig and recorded this CD. At the end of the CD there is a live interview and Marshall Allen reveals that he was a member of the Sun Ra Arkestra trapped in Seattle when Mount Saint Helens exploded in 1984.  Pretty awesome, it makes it clear that a musicians life is always about getting that next gig in line.

Episode Synopsis

  • It is cold in the garden and there was light frosting a couple of times this week
  • I’ve got a new blog
  • People in wheelchairs are judged and face cruel realities
  • Marshall Allen Volcano Quartet “Volcano Swing” CD review
  • Throwback Episode 4 “Help”

The holidays are almost over — just New Year’s. Hopefully I’ll hike somewhere good.

This article by Frank Bruni tells the story of a bright and interesting woman who uses a wheelchair. People who are different struggle to be afforded recognition, acceptance and respect. All before saying, "Hello."

From the New York Times:

Are You Old? Infirm? Then Kindly Disappear

By Frank Bruni

Dec. 16, 2017
LITCHFIELD PARK, Ariz. — Nancy Root remembers when she vanished.

Not the exact date, but the occasion: She went shopping for a mattress. This was a few years ago. Because the mall was so big and her legs were so weak, she used a wheelchair, which was new to her, and had a friend push her.

Their wait for service was unusually long, and later, as she used the wheelchair more and more, she understood why. In the chair she became invisible. In the chair she turned radioactive. People looked over her, around her, through her. They withdrew. It was the craziest thing. She had the same keen mind, the same quick wit. But most new acquaintances didn’t notice, because most no longer bothered to.
(Show Full Article.. )

Working While Disabled

This time on the Disabled Culture blog, we’ll discuss Sweet Bean, a thoughtful film about a disabled person trying to work, very important subject to me as I am a disabled business owner and I spend all my time trying to work in the face of limitations that my multiple sclerosis disability places around me, as well as the perceptions of my partners, co-workers, and customers.

It was part of the 2015 Cannes Film Festival. She is different, but she’s very good at her job. Still, her difference causes people to stay away.

sweet bean

There are some very powerful moments such as when she is hired, or when we learn about her life at home, or when we meet her friends. All in all, the film suffers from some sentimentality but the story and filmmaking are thought-provoking. Check it out on Netflix.

Cover of What's The Matter With Me? Podcast Episode 26

Slogging through the holiday with MS and trigeminal neuralgia pain
I fell and ripped out the belt loop from my carpenter pants
Throwback to the pilot: Episode 5 when I had an MRI reaction and a boil on my butt – gross

Mary from Friends NYC @friendsnyc picked out this sweater

Cutting board

I‘ll Never Give Up – Look at my window: I’m alive.
I didn’t quit doing this thing that is very scary – to share.
I have built my disability consciousness and that will continue.
I am going to bring new voices to the podcast in 2018.
I figured out what I’m going to do about the handicap space at my children’s School- get help from the administration.
I am going to release the email only episodes to get ready for the New Year.

The photograph is of an accessible cutting board I recently began using.