Posted in family

Uncle Lindy

Uncle Lindy standing behind Mel, who is sitting down with a cat on hir lap. Both are wearing collared shirts, suspenders, and flat-top hairdos, without intending to look the same that day. The cat is calico and wearing a Cone of Shame due to eye surgery. Uncle Lindy is wearing a blue shirt with green suspenders and has white hair. Mel is wearing a green shirt with black suspenders and has black hair. Both are wearing glasses.

This is my Uncle Lindy. Great-Uncle Lindy to be exact. He’s my mom’s mom’s brother. I just found this photo again so I thought I’d post it. My brothers and me always called him Uncle Lindy even though he was technically our great-uncle. Like many people in his family, he was long-lived.

He lived with my great-grandma until she died. She was in her nineties. I was about twelve. He took care of her so she could live in her own home.

Whenever people talk about respecting traditional family values, I think of that. In our family it is normal to move in with a disabled relative if they’re in danger of institutionalization. Some people in our family prefer to put relatives in nursing homes, but most don’t. Whatever else we all disagree on, most of us seem to agree that people belong at home and that we have some responsibility in making sure they can to the best of our ability.

I think about that a lot because that’s a value of both the family I was born into and the family I have acquired along the way. And Uncle Lindy showed it by what he did, not what he said. I never talked to him about it, I just saw how he treated his mom, and that’s how I learned you don’t put relatives in nursing homes. That’s a real traditional family value I can get behind, although I also think family members should have a lot more support than they usually do when they make decisions like that.

I want to tell you a bit about (Great) Uncle Lindy because he’s very important to me even though there are ways in which I barely knew the man.

Uncle Lindy rarely talked to me. I don’t actually remember having any conversations with him. They might have happened, but I don’t remember any conversations at all. I remember spending time around him, but I don’t remember either of us talking, and I don’t remember that being weird in any way.

Uncle Lindy lived with my great-grandma in a tiny house. Tinier than my apartment. There was a long thin kitchen that was a tight squeeze even for a child. Then one tiny bedroom and an equallly tiny front room that doubled as a living room and my great-grandma’s bedroom. I think it must’ve been a fold-out couch, but I remember a bed taking up most of the room and her lying in it most of the time as she got older. She had a voice almost too small to hear.

There were stories about Uncle Lindy’s generosity. He never bragged about it. You heard these things from other people. But things like, someone came to his door who didn’t have shoes, and by the time he left, Uncle Lindy had given him his shoes. He was the same way with animals — dogs and cats came to his door wanting food or needing medical attention, and he gave them both. If they stuck around, they became his pets. He wasn’t an animal hoarder — they were clean and he took proper care of them. He was just someone who loved animals and gave them everything he could. He also hiked fish into mountain lakes in his backpack.

Anyway most visits to Uncle Lindy were kind of like this picture. I really like this picture. So I’m gonna post it again.

Me and my Great-Uncle Lindy with one of his cats.

I would be sitting there interacting with some of the animals. And he would be there, or not be there, as the case may be. Sometimes he’d go off and take care of other things or talk to my parents. Sometimes he’d just quietly hang around me and the animals. I’m sure he must’ve talked to me about something at some point, but I don’t remember a single conversation. Conversations were certainly not the focus of our visits.

Glass knickknacks in the window at
Uncle Lindy’s house.

Also, it’s not quite as obvious in the photo as in real life, but behind me and Uncle Lindy, the windows are lined with glass shelves. And the shelves are lined with beautiful glass items that are great when the light shines through them. Little knickknacks basically. Vases and tiny sculptures and dishes.

Anyway, the light shines through all of those things, and it’s beautiful taken as a whole. He must have collected those.

Swedish decoration style involves a lot of ways to use light. There’s a lot of the year in Sweden where there’s not a lot of light at all. So Swedish house decoration often involves a lot of pale colors and other ways to make whatever light you’ve got count for a lot. I wouldn’t be surprised if Lindy’s beautiful knickknack collection, which captures the light coming in the window and makes the whole room sparkle with colors from the glass, has something to do with this. Swedes are often experts when it comes to making a little sunlight go a long way, and I wouldn’t be surprised if his mom took this expertise with her on the boat to America.

Also, we weren’t planning on dressing similar and having the same haircut that day, it just happened.

Calico cat wearing Cone of Shame
from recent eye surgery.

That was the last day I ever saw Uncle Lindy. I was in Oregon visiting my grandparents for the first time as an adult. I discovered that I liked Uncle Lindy a lot. So it wasn’t just bad discoveries on that trip, which is good because I’d also discovered the same day exactly how much I disliked my grandfather. But I discovered I liked Uncle Lindy just as much as I disliked my grandpa, so it evened out. (Both of them had to do with cats, too. My grandpa was proud of having hurt cats for fun. Lindy helped cats and never made a big deal about what he did. You can see one of the cats he helped in the photo, complete with Cone of Shame from recent eye surgery.)

Anyway, that’s my Uncle Lindy, and I miss him. He died shortly after one of the few relatives who does believe in nursing homes, had him put in one, away from his pets. After all Lindy did to keep his own mother out of one for decades (she ended up in one towards the very end, but he did his best), this seemed horribly unfair.

But what I remember the most about him is the way he cared about people, whether two-legged (human), four-legged (cats and dogs), or no-legged (fish). And he never talked about that, to my knowledge. He just did it. But what he did showed enough of his character, you didn’t have to talk to him to see it.

Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

Disability Integration Act graphics that agencies could stand to take a look at too…

This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support.  From the Disability Integration Act website:

The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.

Credit for most of these goes to Cal Montgomery.  His dogs Murdo and Erastus are featured too.  Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.

Picture: A brown tabby cat sitting on a chair. Yellow background, purple text. Words: Hi. I'm Abby. In my house, I can eat, drink, poop, play, and clean myself whenever I want. Humans want the same things. www.disabilityintegrationact.org
This is my personal favorite, and is the reason that my own home is not the same as moving into someone else’s home, no matter how much my agency wants to convince me that moving won’t harm me and forcing me to move isn’t massively unethical.

Picture of a small brown house rabbit on the floor with some vegetables and a toy. Olive green ackground, black text. Text says: Hi. I'm Lily. I spent the first year of my life in a cage. It made me lonely and angry. I'm much happier now that I live somewhere I'm allowed to be free. Humans feel the same. www.disabilityintegrationact.org
Not everyone knows rabbits don’t belong in cages, look up the House Rabbit Society if you want more information on that. Not everyone knows human beings don’t belong in institutions no matter what our disability is. Look up the Disability Integration Act for more information on that.

Picture of a brown tabby cat with white tuxedo markings. Purple background, blue text. Text: Hi. I'm Gallifrey. Listen... Cats don't belong in shelters, and humans don't belong in institutions. www.disabilityintegrationact.org
Pretty straightforward…

Picture of a brown and black puppy greeting a new smiling human by licking him on the nose. Grey background, pink text. Text: Hi. I'm Erastus. The day I got to my new home was a good day. Tens of thousands of people with disabilities are waiting for the services to start new lives in my state alone. You can help. www.disabilityintegrationact.org
This is horrifying but true. This is what I mean by forcing us not to live in our own homes is an ongoing, large-scale crime against humanity. I’m not making this up.

Dog lying on his back on the grass. Purple background, yellow text. Text: Hi. I'm Ersatus. I love my freedom. Disabled people love freedom too. www.disabilityintegrationact.org
It’s amazing how many people don’t grasp this, or seem to think that disabled people ought to be okay with giving up freedoms other people would strenuously object to giving up. They act like it’s the natural order of things. There are entire groups of people who think it’s their job to persuade us to be happy giving up our freedoms. Who think that there’s something wrong or pathological or that we’re in denial about our disability or something, if we still want freedom. That we’re just being stubborn or otherwise causing problems, instead of naturally wanting what everyone else in our cultures gets. It’s like freedom for us is optional and it’s our job to “accept” that. Bullshit.

Picture of an elderly black and brown dog who is very cute. Yellow background, blue text. Text: Hi: I'm Murdo. I have lived with my human for 11 years. As I age, I want to keep living where I feel loved & comfortable. Humans feel the ame way. www.disabilityintegrationact.org
This is a close second in terms of favorites.  People act like when people get older, they should be okay giving up their freedoms as well. This is just as much bullshit as it is when applied to disabled people. There is nothing about being old that means you have to leave your home. Nothing at all. No more than being disabled. This goes whether you acquire a disability or not as you age. Elderly people should not be forced out of their homes any more than disabled people should, nor forced to accept loss of freedom as the price of aging any more than it is the price of disability. The wholesale warehousing of elderly people is part of the same large-scale crime against humanity as the warehousing of disabled people, and is often done by the same industries.

What I like about these is they show how simple and normal it is, what disabled people want.  And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals.  They might see things about disabled people they wouldn’t otherwise see without the analogies being made.  For real.

But seriously my favorite is the one about being able to poop whenever I want.  That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.

And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint.  In fact, the more readily we accept these things, the more we are praised.  And then we lose our freedom.

And usually we die faster too.  Not that anyone notices.  They think we die because we’re elderly or disabled.  Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions.  Institutions kill people faster.  All institutions, whether large state institutions or small nursing homes.  They reduce our lifespan and nobody notices or cares.  That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.

There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.

There is a lot that happens in institutions that is bad and doesn’t need to happen at all.

There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen.  Anything you hear different is a lie used to keep institutions open.

Institutions are our modern equivalent of Victorian workhouses.

Workhouses were institutions for poor people.  Think the sort of thing Charles Dickens wrote about.  They had terrible living conditions and people died in them.  Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution.  People considered workhouses necessary.  People considered workhouses natural.  They were neither one.  These days, people consider workhouses an atrocity and a thing of the past.

But we still have institutions for disabled people, and they are everywhere.  Some of them are large and obvious, others are hidden in plain sight.  But all contain the same thing:  A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom.  If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”

Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature.  Even if it’s entirely “community-based” otherwise.  Real community-based services let you live wherever you want to live.

And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers.  Even some that let you stay in your own home.  If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements.  It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.

At any rate, all of this is very important, and I love these graphics.  And definitely tell people about the Disability Integration Act and give them the link to the Disability Integration Act website.  Which is http://www.disabilityintegrationact.org/

 

 

 

 

 

 

Posted in death, poetry

R.I.P. Peri

Peri, the Iron Parrot as we called her, because of her ability to survive damn near anything, has died of fatty liver disease. May she rest in peace.

And I can only give her this poem that I wrote to her when we were sure she was dying before, but she wasn’t done yet.

Now, it is hard to imagine my friend Laura without this parrot, the two of them were a pair. They went together somehow.

Anyway, all I have to give is this poem and these pictures.  I’ll miss her.  A lot.

Over the trees
I see
A flock of birds
Made out of nothing but light
A flock of birds
Waiting for your final flight
So don’t be afraid
Don’t be afraid when they come
They’re only coming
To welcome you home
When it’s time to fly away
Then fly away
Don’t hold out too long
Trying to stay
You have the whole of eternity
To fly into
And everyone there
Will join with you
So when you know it’s time
And you’ll know
Fly away
Leave us behind
Our love will ensure
We won’t be long behind you now
We won’t be long behind
Behind you now

Peri, a Quaker parrot, standing on her cage with her back to the camera.
Peri with her back to the camera.

Peri, a Quaker parrot, standing on her cage dancing a little.
Peri dancing with me on her cage.