Posted in Being human, Developmental disability service system, HCBS, Self-advocacy

Let’s get one thing straight.

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red.  Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact.  There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now.  I fully expect them to try at some point.  Possibly soon.  Possibly now.

But anyway.


To be really, really fucking clear.

There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.

The fact that some people there have nothing right now is obscene.

I am not causing them to have nothing by demanding what is both my right and their right.

Hell, I’m not demanding as much as I deserve.  I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.

Right now, I’m just demanding what i need to survive and live in my own home.

Survival is a human right.  Living in my own home is a human right.  As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to.  Every single one of us is entitled to the supports we need to survive and live in our own homes.  The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.

If I ask for these rights for myself, I am asking for them for every single other client of the agency as well.  I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that.  And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us.  I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well.  In asking for what I need, I am merely doing the exact same thing.

So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.

I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.

When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.

I refuse to play their divide-and-conquer games.

I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.

If I don’t get what I need to survive, I’m not getting enough.  If other people are getting nothing, they’re not getting enough.

I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.

So don’t ever get the idea in your head that all I care about is what I get.  I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home.  These are not excessive demands.  These are bare minimum demands.

They are playing a lot of head games and a lot of word games.

But I can still see what’s happening.

And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor.  Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.

Also, less than I need to survive safely is still less than I need to survive safely.  The fact that I could get even less doesn’t change the fact that I need more than this.  And that until recently, I was getting more than this without increasing my hours or changing anything.  (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources.  The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)

And no, I am not unique, that’s part of why all this frigging matters so much.  If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.

Posted in Developmental disability service system

Agencies will ‘protect’ staff but not you, even if you’re more in danger.

There’s nothing wrong with protecting staff from on-the-job injuries.  In fact that’s a good idea.  But that’s not really what this is about in the first place.  That’s just what they say it’s about.

Despite the fact that many people with developmental disabilities are physically disabled, my local agency does not like giving us help doing things we are physically unable to do.  So they come up with a long list of excuses why it’s not possible for them to do those things for us.  One of those excuses is staff safety.

I have severe osteoporosis, to the point I’ve actually broken a rib by sleeping on it wrong, developed a stress fracture in my spine without anyone knowing what precisely caused it, broken a hip, and broken so many ribs that x-rays and CT scans of my chest no longer include a number of healed rib fractures, just “multiple”.  It’s ridiculously easy to break my bones.  I also have congenital myasthenic syndrome, which means that my muscles, while capable of strength at their best, wear out and weaken more easily and unpredictably than average.  The combination makes falls more likely and dangerous, especially when combined with an endocrine condition that can turn a broken bone into a life-threatening emergency and that can cause its own weakness once that happens.  And there’s more, I just thought three conditions would be more than enough to get the point across.  There’s years worth of documentation of these things and more, so my agency can’t claim ignorance.  Especially since they go with me to all my medical appointments.

So there is a lot of bending, lifting, and basic physical work that I either shouldn’t be doing at all, or should be doing in a heavily modified fashion.  I need the same precautions around certain activities that would be typical of an elderly person with unsteady balance and fragile bones.  When I go out, I use a walker to get around because I fell too often using canes and crutches.  The walker also makes it hard or impossible to lift or carry certain things, including other assistive technology that’s vital for me.

Anyway, the agency won’t let staff lift a messenger bag I carry with basic equipment I need for communication and feeding tube maintenance.

At first they wouldn’t even explain why.  They’d just give it to me and insist I do it, no matter how I was feeling, no matter how unsteady it made me on my feet, no matter how much pressure it put on my muscles and joints, no matter how unsafe it made use of the walker.

When I finally started insisting on reasons, they told me it’s because staff can injure themselves carrying things and that they have a policy that staff are not allowed to lift or carry anything for clients, even messenger bags.

I asked what they do if the person really can’t lift the thing.  They got a bit squirmy.  Then they said they work something out that works for everyone.

They never did work anything out for me.  They never even tried.

They did tell me that people injure themselves lifting bookbags.

Which I could believe.

But I have objections to this as their real explanation for what’s going on.


There’s another agency locally where every client is physically disabled.  Staff for that agency are trained in safe lifting practices.  I don’t mean lifting entire people.  I just mean they are required to be able to lift at least a certain amount of weight, and they even have to pass a lifting test to be able to take the job.  They have to both be capable of lifting a certain weight of object over their head, and be capable of demonstrating that they know how to do so safely.

On the other hand, this local DD agency just pretends there’s no such thing as safe lifting and that nobody needs to be trained in it.  Nor do they provide equipment to aid in lifting if direct lifting isn’t possible.  Not even people who work with physically disabled clients.  Of which there are many, because many developmental disabilities have a physical component.

What also gets me about this concern for staff safety, though, is that there is no concern for my safety at all.  They know precisely why it is unsafe for me to be lifting and working in certain ways.  They know precisely why it is impossible for me to do certain things, and dangerous for me to do others.  They know exactly what injuries to my body and even dangers to my life can result from the expectations they are placing on me.

Yet when push comes to shove, I’m the one supposed to be doing bending and lifting that will injure or harm me if I do it long enough, and staff don’t have to do anything.  I’m sure that staff can be injured by bending and lifting, especially if they are not properly trained in how to do it.  But the chances of me being injured, and injured more severely, are much higher.  And nobody has shown any concern for what will happen to me if forced to do these things.  Until I asked “What do you do if someone can’t do this stuff?” they didn’t even think about other solutions.  And honestly they didn’t even think much about other solutions after that.

The thing is, the actual requirements of their job don’t extend only to helping us out with cognitive limitations.  If we have physical limitations, they are required to deal with those.  They can’t just pretend they don’t happen.

I think it would be terrible if they didn’t care about worker safety.  But my gut tells me this has nothing to do with worker safety, because they don’t really seem to care much about that either unless it’s a handy excuse for something else they don’t want to do.  And if they did care about worker safety, they would care about training every single worker in basic lifting practices.  They don’t provide that training to anyone I’ve ever heard of.

I also find it telling that whenever it comes to a conflict between my safety and worker safety, worker safety wins out.  Even if the situation is only a potential abstract danger to a worker, and has already proven itself an existing concrete repeated danger to me.  Not that it should be a choice between either one.  An agency acting properly would protect both its employees and its clients.  But it’s interesting how no matter how physically fragile you are, it’s always better to them to endanger you than to ‘endanger’ a physically fit able-bodied worker by having them do something that ordinary people do every day on and off the job.

So basically if anyone’s body is gonna break, they want it to be mine or another client’s, as far as I can tell.  At least that’s the story their repeated actions towards us spell out.  And I am still convinced the concern for worker safety is mostly bullshit, or they’d be protecting them better as well.