Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Friends and Family Friday

friends and family Friday
friends and family Friday.

Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.

Posted in culture, family

It’s not a cowboy hat or an adventurer hat or a costume.

People react a lot to my hats.

Mel wearing a brown brimmed hat I wear all the time.

Maybe it’s because I’m in Vermont.  I don’t know.  People come up with a lot of weird meanings for my hat.  They think it’s a cowboy hat.  Or an adventurer hat.  Or some kind of costume.  It’s not any of the above.  It’s my father’s hat.

Maybe it’s an Okie thing.  People wear hats.  Wearing hats has specific meanings I can’t put into words easily.  I can look back in generations of family photographs and find people wearing similar hats, similar clothes.

ancestors with hats
Some of my Okie ancestors, with hats.

My father always wore a hat.  But he wore them for different reasons.

One of my favorite memories of my father and his hats was the way he’d wear it when he was headed out to do something important.  He might still be wearing his usual jeans and shirt, but the hat meant things were important and he was dressing up.  You could tell by how deliberately he put it on.

And he wore these hats as if the hats grew out of his head.

I saw hats in family photos, hats on family members, I saw the way people treated their hats, the way they touched their hats, the way they wore their hats.  Hats are important in my family and culture.

Ron holding baby Mel.
My dad in one of his hats holding me as a baby.

Dad squatting in woods
My dad squatting in the woods in one of his hats.

When my father died, he sent me a lot of his hats, and a lot of his shirts and suspenders.  I began wearing his clothes, or his style of clothes, every day, including his hats.

People told me for the first time in my life I looked comfortable in my own skin.

Me in my dad's clothes
Me wearing my dad’s clothes and hat, feeling utterly natural.

It wasn’t a conscious thing.

But the clothes started looking like they grew on me, the same way they looked like they grew on him, the same way similar clothes look like they grew on many of our relatives who dress similarly.

I started feeling more connected to him.

It sounds like a cliché, but maybe some things are clichés for a reason:  Wearing his clothes made me able to feel connected to him, I found the parts of me that he left deep inside of me when I wasn’t looking.  It wasn’t about how I looked in the clothes, it was about how I felt in them.  I felt connected to him, connected to my family, connected to my culture.  I felt things that have no words, no names, more depth than you’d imagine from a set of clothing.

But then I always connected to the world well through objects and the connections between them.

And, it turns out, so did my father.

I continue to discover him inside of me in ways I could’ve never imagined.

I continue to discover the things he has passed down to me without word or instruction.

And those things, that love, are the most valuable things of all.  They form connections and bonds between people.  They’re important.

Photo on 3-2-18 at 2.58 PM #3
Mel slouched over in bed wearing my dad’s clothes and hat, with my cat Igor looking on.

Mel wearing one of my dad’s orange shirts and hats.

So when you see me in any of my dad’s hats.  It’s not a costume.  It’s not a cowboy hat.  It’s not an adventurer hat.  It’s a connection to things I didn’t even know were inside me, between me and my dad, between me and my family, between me and my culture.  It’s remembrance and love but it’s so much more.

People are often taught to view clothing as superficial and vain.  To view objects as just meaningless dead things.  But clothing can tell you a lot about where you come from.  It can connect you to your roots, however loving, uncomfortable, and complicated those roots might be.  It can be a reminder of who you really are.

I’m glad I wear my father’s hats.


Posted in Developmental disability, Developmental disability service system, HCBS

Isolation: The big lie of community-based services

Isolation in the DD system is the norm for many adults.

Some of us are so severely isolated that the only people who know we exist are the agencies that provide us services.  And families, if we have one.

There is a long history of putting people with developmental disabilities together in institutions and other segregated situations:  Large developmental centers, group homes, segregated special education schools, psychiatric institutions, ICF/DDs, sheltered workshops, and many others.

We are rightly moving away from all that.  Forcing a bunch of people to live and spend time together because we all have developmental disabilities is wrong, inhumane, and dangerous.

But the current DD system has taken advantage of this trend towards isolation.

We never see each other.

My agency has 670 adult HCBS clients with developmental disabilities.

There are social events, often put on by the agency.

I am not usually able to make it to those events.  But I can’t avoid noticing that when I do show up, it’s always the same 10 or 20 people at them.

So most of us have little to no contact with each other.

This makes it damn near impossible to organize to advocate about the way we are being treated.  We don’t even know each other.  There are, as I said, people so invisible to the rest of the world that only the agency knows they exist.  This puts us in a terrifyingly vulnerable position.

But if you’re from VOR and gonna use that to defend institutions, go away.  Putting people all in one place doesn’t protect us, it does the opposite.

But so does isolating us.

And we are more than just isolated from each other.

We are isolated from our communities.

This is the big lie of community-based services.

People love to talk about how we are integrated into our communities, included into our communities.

For the most part we are not.

At best, we are physically integrated.  Sort of.  This means that we live in places where nondisabled people live.  People love to point to this.  They love to say that we are living these amazingly inclusive lives in the community.

But mostly we don’t.

I live in a building where people without developmental disabilities also live.  This means, to the system, that I am in a community-based program and am successfully integrated into my community.

I don’t know my neighbors.

I have no personal relationships with anyone nearby.

I don’t see the one local friend I have (who also has developmental disabilities).

Most people don’t know I exist unless they see me on the street and recognize me.

But I don’t get out much.

So pretty much the only people I see are DD agency employees and medical professionals.

I have a hard time keeping up relationships with people, because of the way my brain works, rather than a lack of interest.  I have spent years completely isolated from friends I care about very much, without getting any help to do so.

Being isolated like this warps your mind.

Spending time only around agency staff warps your mind.

You forget — if you ever knew — what an acceptable life is, what acceptable treatment is.

You begin to accept whatever the agency tells you because it’s all you hear.

Your world gets smaller and smaller, weirder and weirder, and it creeps up so slowly you don’t always even notice.

I have a good relationship with all of my staff but it does not mean I am not severely isolated.

Isolation has all kinds of effects on us.

It makes us easier to control.

It makes us easier to abuse and neglect.

It makes it harder for anyone to notice if someone is doing us wrong.

It makes us lonely and desperate.

It warps our minds until we start believing the agencies even if everything in us tells us it’s not true.

And it prevents us from getting together and organizing.

All of these things lead to worse lives for us.  They lead to horrific abuse and neglect being acceptable.  They lead to terrible things.

We are doubly isolated.

We are isolated from everyone in our surrounding communities.

We are isolated from each other.

These things are dangerous.  These things can even be deadly.

This is why I want to write about things like this somewhere someone will read it.

And the solution, by the way, is not a return to previous kinds of institutions where we are all together.  Those are just as set up to allow abuse and neglect, if not more so.

There is a trend to discourage social relationships between people with developmental disabilities and each other.  This is at best a misguided response to segregation, and at worst a deliberate effort to keep us powerless and disconnected so we don’t even know what is happening to each other.

The solution is for us to truly be included in our communities.  Which means being able to have the social relationships and ties that everyone else is able to have.  Both ties to nondisabled people and ties to other people with disabilities.

We aren’t there yet.

Not by a longshot.

The idea that we are all included in our communities because we are (more or less) physically present, is a big lie.

And it’s a lie that hurts us all.

The solution is not to keep us from having our own homes or bring us back to how things were before.

The solution is to ensure that real inclusion in our communities, with the real social ties and real choices involved, is actually happening.  We need human connection, and staff aren’t a substitute for that.