Mouth asks,

Why make
such a big deal over consumer control?


Right now I know there are people who think I'm bizarre. But they don't do anything about it because I am independent.

I don't have a visible disability, and I'm living on my own. But the minute I would need help, then people will come in and start saying, 'She's not making good choices.'





photo of Alene Jensen




an interview with Alene Jensen
by Josie Byzek

photo by an innocent bystander

This interview first appeared in Mouth magazine #57 in January 2000

Alene Jensen, aka AJ, is a fireball who manages the personal attendant management services at the Topeka Independent Living Resource Center. TILRC serves as payroll agent for 797 Kansans who receive Medicaid-funded attendant and support services. You read that right: 797. AJ and TILRC can serve so many people because the "consumers" themselves hire, manage, schedule, train -- and once in a while fire -- their own attendants.

In the photo at left, Alene is under arrest during an ADAPT action and making a note to that effect in her journal.

But helping professionals seem to have been trained to make our choices for us, for our own good.






When I train case managers, I start out by asking them what they had for breakfast. Why did you choose a donut? Do you think that's nutritious? Some people just have a coke. Is that nutritious? No? Well, I ask them, are you maintained on that? And who picked out your clothes today? Was that the appropriate thing to wear?
People need to know, they just need to know, that everybody gets a choice in life. If you are told different, don't eat it. Don't fall under their spell.
What is this disability thing, and why would it make a person different? Why would somebody with a disability want somebody else picking what they wear and what they eat? Just because I have a disability doesn't mean I have to have a four course meal every time I sit down.

So when I train case managers, I go around the room, asking, 'What time did you go to bed last night? Everyone says a different time. I say, why? Well, it's because that's what they wanted to do. Then why would somebody have to go to bed at nine o'clock every night because that's when somebody could send an attendant? When I worked for the state, for adult services, there was no such thing as self-directed care. Eight or nine o'clock was the latest they'd go put anybody in bed. Do you want to go to bed at eight at night? I don't.

That 'walk a mile in my shoes' bit is a toughie...

Sometimes the case managers are in disbelief, and it's like, 'Well, but...' Well, but what? What if you go out here today... and I try to put them in the situation. Like one day it's icy and stuff and you fall down these steps and you break your neck and you're a high quad. Now you need help with every single thing in your life. How many people do you want looking at you naked? Do you want to choose the person who comes in and gives you a bath?
They say, 'I never thought of it that way.' Well, think of it. Because it could be you today, it could be me tomorrow. Our wants and our needs and our likes and dislikes are not going to change just because we need help. But there we'll be, eating the same thing for breakfast every day.

I ask them, have you ever had a friend say, 'Let's go to the Dairy Queen and have a great big banana split.' And you skip lunch and do it. So what?! You didn't die of it! Neither will somebody with a disability. But that's the biggest thing I hear out of case managers, especially for the 'frail elderly.' They say, 'You have to have a balanced diet.'
Well, lots of times I'll have popcorn for supper. Or I'll hang up my clothes outside on the line at midnight. And nobody says a thing to me because I'm 54. But when I'm 84, they going to say, 'Oh, my God! AJ's out there with no no shoes on!' So what! But when I'm 84 they'll think I need protection.
I am who I am now, and I will always be this way.

We hear the argument that when people control their own lives, it's not safe. How do you answer that one?

People aren't exploited in nursing homes? Aren't sexually abused? Aren't fed their own feces? Excuse me!
And fraud, they all want to bring it up.'What if the person [hired as an attendant] really doesn't do the work and threatens them, because they're so vulnerable...'
Well, the same thing happens to people without disabilities, doesn't it? But it's so minute a number, why would you even address it?
'He might fall, so he has to go to a nursing home.' You're telling me he won't fall in a nursing home? Those things happen in nursing homes, and at home, all the time. A nursing home's got no guarantee -- except to give you misery.
How would you like to share half of a piss-smelling room with somebody, not even a curtain between you, and somebody's telling you when you have to get up, when you have to eat and what you have to eat and who you see. That's not for me.

If I had an attendant that was ripping me off and I was afraid, I would call my independent living counselor and tell them. If the person feels like they're in a dangerous situation and they want to get rid of that person, and they don't feel like they can, they can call me. I'll go out there. I'll fire them. In a nursing home, you can't fire anybody. In a nursing home, they'll tell you, 'Eat shit and shut up.' They will! If you don't like the attendant on your shift, you can't change that. It ain't gonna happen.
We [at Topeka Independent Living] only believe in self-directed personal assistance. What about people with cognitive disabilities? What about them? Just because you have mental retardation doesn't mean you're a moron. That doesn't mean you don't know what you want to do, or who you want to do it with or when you want to do it. Yes, sometimes you need somebody to act on your behalf -- a person you know, a person you have designated. Not just somebody out of the blue saying, 'I'm your social worker and this is what you need and this is who's going to do it, and this is when they're going to do it.'
That don't cut it.
People with mental illness, no different. It's just something you have to deal with. I have not met anyone with mental illness who could not self-direct their own services.

But if things get out of hand, you can always step in, right?

We never assume that people want intervention. If they want to be self-directed and they've never done it, we'll say, 'Here are the steps on how you can do it and if you want us to, we'll have a person help you. If they need assistance to pick their own attendant, like if they've never done that before and they need some cues or some training to do that, we'll provide that free of charge.
We had a person once who had severe spastic cerebral palsy, and a communication deficit. He was really bright, and he had written his own interview questions. He just wanted someone with him when he interviewed attendants, someone who could speak because people couldn't understand him until they got used to him.
He ended up coming to the center and advertising for his applicants and then they came here for interviews. He had his list of questions. I just acted as a mouthpiece for him. He got to see their body language and all when they saw him.

We've heard that you get people out of nursing homes on a regular basis. How do you do that?

The way we get people out of nursing homes is to ask them if they want out. A woman who used to work here, Brenda Hanna, she and I would go into the nursing homes and ask people if they want to leave. We would just start talking to people out in the smoking room. 'How do you like it here? You want to be here? Would you like to leave? You would? We can help you get out of here.' We would just start the ball rolling. We've had nursing homes run us out before. We were the dastardly duo.
More times than not, people contact us. They've heard, by word of mouth. They tell us about somebody in a nursing home that really wants to get out, and we contact them. We also have what are called 'resident reviews' that our state requires, quarterly. The nursing homes go through all their residents and if they fall below a '26,' which is an eligibility criteria, they're mandated to tell the state. And the state lets the centers for independent living know and we go in.

So first we'll say, 'You want to leave?' and they'll say yes they do, but they don't have anything. They don't have the stuff to keep house with. And that's not a problem. We'll help them get something.
I've been known to go to garage sales and go, 'Hey, there's a chair! I know somebody can use that.' Hop out, three bucks, and throw it in the back of the truck. Or the Salvation Army. We have this warehouse full of stuff. We have hotels in town when they change their beds, they'll give us their mattresses and box springs. You can sleep on a mattress and box spring. We have some institutions in town that will give us appliances. Somebody gave us a piano.
We don't have every single thing to set up housekeeping, but we usually have a way to get them. We can have an independent living specialist take you around to look at places if you designate a part of town you want to live in, or type of place you want to live in.

But you couldn't do that in most other states, could you?

The attendant services and supports are available here, in Kansas. The whole state has waivers so that if Medicaid pays to keep you in an institution, Medicaid will pay for your services at home. Getting that changed wasn't easy. Even now we still have to keep after the state legislature, to get everybody served. But that's the way it is now. Any state can do what we did in Kansas. Centers just have to band together because, individually, your voice can be squashed out..
I can hardly think of anybody that really wants to be in a nursing home. Most people, even if they have severe multiple disabilities, want to be at home. If you can get somebody coming in, what's the difference between your home and a nursing home? The difference is your freedom.

How are we going to re-train the world so that people with disabilities will be allowed to make their own choices?

A lot of people have this misconception that a person with a disability isn't able to do or think. They see a person in a wheelchair, and they talk really loud. There are some people who are passive, and they take it. Maybe they've taken it all their life. If a kid with a disability wants to get out on their own, it's hard for parents to cut them loose because they've done for them so much. The kid will say, 'Well, I can do this.' Then it's like, 'But what if...'
If I would leave home to go to college and decide it's rough out there, and I moved back home, nobody would think anything about it. But if a person with a disability comes back from college, it's 'Well, you failed.'
I was just talking to my dad today. My dad's 82 years old. We were talking about him dying. He said, 'You know, I think I'll go pick out my lot to get buried in. I can't decide whether to be cremated, or to just be buried. A lot of people don't like cremation.'
I said, 'Dad, what do you want?'
'Well,' he said, your body's going to rot anyway, you may as well be cremated.' I said that's his choice. Who cares what anybody else thinks. Your body, your life, your death.
My advocacy, it goes with me everywhere. When I'm visiting with people and they ask me what I do, next thing they're asking about somebody they know. 'Do you think she could live on her own?'
Why not? If that's what they want to do, why not?

To find out how every state can become as advanced and progressive as Kansas! Click your heels here and go directly to Freedom Clearinghouse.

Click here to link to the website for TILRC, where AJ works.



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