For the love of books

I used to be an avid reader. There were a few years I read 75-100 books, and I don't consider myself a fast reader. I just love the written word and couldn't get enough of it. I even wrote a book blog for a while, keeping track of everything I read and writing a number of reviews.

The past several years I haven't been able to stay with a book, probably due to pain and pain meds sapping my energy and concentration. There's also been my obsession with the news and television (which I watch on my laptop). But last week a couple of things conspired to snap me out of it - after the Kavanaugh hearings, I couldn't bear to watch any news, not even my beloved Daily Show or Colbert. I can't even open Facebook right now. It all sickened me. I turned to a book that someone had recommended - Every Note Played, a novel by Lisa Genova - about a concert pianist who contracts ALS. It is painfully beautiful prose, detailing his loss and grief through the progression of the disease. It hit close to home in the surrender to the losses (though mine are nowhere near that horrible disease), but I was somehow able to distance myself from it enough to be engrossed in the writing and the story. There were moments of humor as well as the heartache, like this moment that had me chortling:

She was ecstatic to see the wheelchair go. In her 32 years in the real estate business she says that nothing ruined the feng shui of a home more than a power wheelchair.

(Genova also wrote Still Alice, a novel about Alzheimer disease; I have it on my shelf but haven't read it yet.) I whipped through the book in a few days - I think it's the first book I've actually finished for a few years. (Exception: Born a Crime by Trevor Noah.)

A small sampling of what awaits.

I scanned my shelves - filled with unread books - for another candidate and pulled out a Rose Tremain book, Sacred Country. I remember loving other books of hers, and I was immediately drawn into the story and writing. How's this for the turn of a phrase: The infinitesimally small but telltale feeling of bruising on the inner thighs that accompanied desire….
Oh my.

I've been almost giddy with my renewed love of good writers who craft stories, paint pictures both beautiful and ugly, create phrases that sing on the page. Perhaps now I will be inspired to get back to my own writing. 

Next up: I found myself in Powell's Books yesterday and spotted a new Isabel Allende novel, In the Midst of Winter. She is among my top five favorite authors, so I didn't hesitate to pop it into my basket. I almost started it right away, but knew I probably wouldn't get back to the Tremain book if I did, so it sits on my desk, waiting patiently, a delicious treat to savor one day soon.

I have a lot of catching up to do!

The Ways We Tell Stories

‘Come and be inspired,’ said the flyer

Women will tell their soul stories

sing their heart songs

gift us with hope and laughter

and well-earned tears

But I will not be there

Unable to breach the wall, stuck

at the bottom of the stairs - again - 

I long for the inspiration, 

the connection and camaraderie they will share but—

I cannot be there

If you are looking to me for inspiration: 

nope, not today

I do not feel graceful about this loss 

this being left out - again

My upper lip is not stiff

my chin is decidedly not up

I allow myself to wallow in bitchiness

and well-earned tears 

===============

september 24, 2018 . DRAFT

terri grayum

Is it accessible?

[Caveat 1: I know there are other disabilities people struggle with that need to be addressed, but this is the one I know, so this is what you get!] 

[Caveat 2: I realize I've written about this before, but it's an ongoing issue and I still need to kvetch about it and remind people about it. Plus, here are some solutions!]

I sound like a broken record: "Is the venue accessible?" I ask every time I plan to attend a concert, workshop, meeting, party. Some people have gotten that question from me multiple times; now I just say, "You know what I'm going to ask." I admit to occasionally asking even knowing I probably wouldn't attend; it's my self-imposed mission to remind people that it's important to consider their venue choices in terms of access. I know it's not always easy to find a place that everyone can access; and I know that people often try and don't always succeed.


But I will tell you this: it feels rotten to be excluded from an event that I want to attend. 

I don't expect access to be the first consideration when people are planning events, but I do hope it occurs to them at some point, and even that it's fairly high on the priority list. 

Things have come such a long way from pre-ADA days. I can't imagine what it was like for people in wheelchairs before curb cuts and mandated accessible bathrooms and entrances to public buildings. But we still need to do better.

One of the reasons I'm not singing with my choir now (Aurora Chorus) is because of access. The rehearsal room is manageable, but certainly not ideal (and this is a State university building!). The room entrance is at the top tier of the choir risers/steps, and so I'd be stuck there, unable to get to a lower level to see and hear better and participate fully. It worked, sort of, when I was using a walker, though I'm amazed I didn't fall, hauling and bumping the walker up and down the steps. The concert venue they have used for the past six years or so - a church - is abysmal for people with disabilities, both for audience members and for performers. The stage is difficult at best and impossible at worst to access with a wheelchair. But thanks to the persistent efforts of the board and concert committee, the choir is changing venues, and they tell me that this one is accessible, so I may be returning in the fall. 

Something that will make that possibility even more doable is the wonderful wheelchair van we now have! I no longer have to wrestle with getting the scooter on and off the power lift, and I can now take the wheelchair out and about, not just the scooter. (More on this in the next post, coming soon.)

Having an event? Check it out!

Below is a checklist I devised of some things to consider when planning an event. Some of these will be N/A if your event is in a private home (but if there are too many N/As, consider changing venues!). These apply to wheelchair users but are also appropriate considerations for people using walkers or canes.

• Assistant: Is there someone - not the host - who can be a point person? Someone to connect with the wheelchair user to show them best access and check with them through the event? I have appreciated this so much when it happens; for example, Artichoke Music does it right! I felt downright pampered there when I attended a concert. 
• Location: Is the venue easy to get to by car or mass transit? How's the parking for a van with a ramp? Is it possible to save a parking spot or spots for wheelchair users or people who can't walk far? 
• Entrance: Are there steps? Even one step can make entrance impossible. If so, is there an alternate entrance? Make sure it's clearly marked and easy to get to. Another option: some mobility stores have ramps to rent.
• Seating: Will there be designated wheelchair seating? Some users are fine sitting in their chairs, others prefer to transfer to a "real" chair. Paths to seating need to be kept clear - free of equipment, cables, chairs, etc. 
• Bathroom/s: Are they accessible? This can mean a lot of things: doors need to be wide enough for a wheelchair; grab bars are mandatory in places that claim to be ADA compliant. If this is a private home, do the best you can to make it accessible. I can walk a short distance if I have sturdy things to hold on to, but not every wheelchair user can. If your bathroom isn't fully accessible, be sure to make that known.
• General flow: Is the event on more than one level? If so, is there an elevator? Are aisles and access routes clear and wide enough for a wheelchair or walker? If there are food tables and products for sale keep access open for wheelchairs and keep the table height low enough for a wheelchair user to see and reach the items - especially the chocolate! For a banquet-type setup with multiple tables, often the tables and chairs are too close together to allow a walker or wheelchair through. Do the best you can to create pathways so the user isn't confined to the perimeter. You may have to remind other participants to keep pathways clear.
• Signage: Have some good, legible signs to indicate where bathrooms, alternate entrances/exits, food and drink are. Make sure they're posted at a level that someone in a wheelchair can see easily.
• Emergency exit: It's not a bad idea to have a plan if it's necessary to evacuate someone who can't walk, especially if the event is on an upper level and the elevator isn't usable. Designate a few strong people who could potentially help someone down the stairs if necessary.

If you are the wheelchair user, it's always a good idea to call ahead of time to find out the particulars and to give the event host a heads-up to expect you and your chair. If they need to make any changes, they will appreciate having advance notice.

Well, that's one way to see the stage!

Big thanks to those of you who are already aware and doing much of this. Do you have ideas to add to this checklist? Please leave me a comment below or email me at ladyluck AT teleport DOT com. This is a team effort! Thanks!

Under Construction? I am so Over Construction!

The walls look a bit gray here,
but they are a lovely light lavender.
There's a skylight above.

I didn't dream I would still be writing about cottage construction in June, but here we are, still in the midst of it. The good news: I have a lovely, functioning bathroom, with accessible shower, toilet, and sink, plus some storage. It is 95% done, just a few tweaks and some finish work to do. It's such a joy to have this - it has made life much easier for me and for Laurie. Now I don't have to use the house bathroom multiple times during her work day, which is quite disruptive to her and the children.

However, the outside is undergoing an upgrade as well. Because we permitted it as an ADU, there are strict fire codes: siding needs to be upgraded which requires a lot of things I don't understand. AND, as I learned last week, we need another layer of drywall on one of the interior walls, which will require another breakdown of all the things I so lovingly put back together recently - bookshelves, decor, kitchenware. And it will again require me to be out of the cottage while the work is being done. To say I'm cranky about this is a great understatement. I have no PG-13 words for it. It is supposed to take a week. We'll see. Liza and I may escape to the beach.

The possible silver lining, unless we run out of money, is that it will be an opportune time to turn the kitchenette into an accessible, more workable kitchen for me. We've been picking lots of brains and scouring websites to see how we might do this on a limited budget. I need lower counters, lower cooktop...you get the idea. 

I'm rather fond of this Star Trek bridge look:

Make it so!

If you have any ideas or resources to share with us, feel free to comment.  

Here’s an additional bathroom/shower photo: decorative tiles I had made from some of my aquarium photos.

Anemones and jellies in the shower.