Twinkle Little Star

A Reader Asks: Why the Herds?

Note: I have had much computer/internet connectivity the past week and a half or so. I’m sure it has absolutely NOTHING to do with the fact that my father has gone crazy trying to get his wireless to work by screwing around with my router as if he knows what he is doing. Anyway, he leaves tomorrow and I think we are back online. I owe a few of you emails and I haven’t forgotten.

So,

Shannon

writes:

I have a disability-related question for your blogging calendar:

I shop at this evil, big-box store ("Meijer" if anyone else knows it) and they seem to employ a large number of visibly disabled people. I'd say of the employees I see there on any given shopping trip, maybe half will be disabled--from cognitive disabilities to wheel-chair users, the partially paralyzed people or amputees.

Now, on the one hand, I'm all, "hey, it's nice to see so many queers in one place" (which is how I've come to think of disabled people--as my fellow queers). On the other hand, it's an evil big-box store.

Are they getting slave labor from some evil government program or what?

I don't expect you to actually know a 100% accurate answer to my question, but I figured you could speculate with authority.

I can’t say with specificity what is going on there. Half seems awfully high so I would assume some kind of community/government agency is involved. That may be good or bad, depending on many factors. Here is a quick and dirty abridged speculation on why many times you might see people with disabilities working in packs.

Sometimes, in some communities, there will be a sort of glut of people with disabilities working in one place because of a manager or HR person that for whatever reason has a vested interest in the disabled community. They may have a disability themselves or have a relative that is disabled and actively recruit disabled employees. Word gets around and then a lot get hired.

Another thing that happens sometimes is that one or two disabled people “break in” to an employer and get the accommodations all set up, paving the way for others. An example of this happened in

Omaha

at the Marriot Hotel chain reservation centers. A couple of visually impaired people beat down the doors and had software engineers develop the reservation software that they could use. Then, a whole bunch of other folks got on board and took advantage of the new technology.

There are also a few programs like the Randolph-Sheppard Act which give preferential bidding to the disabled for jobs in government. The classic example is visually impaired vendors. Many federal and state government buildings have vending machines or cafeterias and food stands that are managed by people with vision impairments. They apply to manage the stands and machines and get affirmative bidding privileges. The interesting thing about this, I’ve always mused, is that vending is a job that deals with many things that people don’t think visually impaired people can do. You deal with a lot of merchandise and have to keep inventory, you have to get that inventory from place to place yourself without a car, there is considerable foot travel involved sometimes, there is cooking and food prep, and you are dealing with large sums of cash that you have to account for and handle. There are many, many successful blind vendors out there, many of which handle multiple locations and machines and cafeterias and workers and such, which is great. But I wish the private sector would look at their success in this area as an example of how productive they could be in other competitive jobs.

Then there are a slew of community and government programs that “broker” jobs for disabled people. These programs can be great, or they can be kind of screw-y and underhanded. There are many ways that they go about it. Sometimes, they just go in and do the advocating on behalf of a potential employee as sort of a front person or placement specialist. This works well for someone who can be a great, oh—I don’t know—file clerk but is a lousy interview. And also, someone can be a great file clerk and a great interview, but they still need an able bodied person to go in and pave the way for them. It sucks and I resent this, but it is true.

Sometimes, there is no current open job that a disabled person can do, so a broker who is experienced in job development goes to a potential employer and tries to get them to ‘create’ a job. This isn’t a pretend job, it is usually a job carved out from several other jobs. For example, a company might have an opening for a secretary. The job description includes typing letters, answering the phone, filing, photocopying, shredding paper, hole-punching and binding, etc. So, a job developer has a client who can do all but type letters and answer the phone. The job developer tries to convince the employer to rearrange the job description to fit the client with a disability. For example, the disabled person could do all the photocopying, filing, shredding, hole-punching and binding for three current secretaries. Then the three current secretaries would have more time available to handle the additional calls and letter writing. To me, this is only fair if the disabled employee gets a competitive wage. Sometimes, to seal the deal, the job developer says, well you’ll only have to pay my client minimum wage, when you’d be hiring a whole new secretary for $12.00 an hour or whatever. The thing is, you pay secretaries $12/hr. to hole- punch and photocopy currently, even though it isn’t their whole job. The disabled person should get the same rate of pay even though they have carved out an “easier” job. The secretaries are usually quite happy to dump the scut work anyway, so no one loses if everyone is paid accordingly.

A disabled employee might also have a “job coach” that works along side them. The job coach helps them train for the job or helps with some part of the job that they can’t do. Sometimes the job coach is just temporary (but longer than a person would usually be in training, say three to six months or longer), or sometimes the job coach is permanent. Sometimes a permanent job coach just monitors and problem solves with the employee and employer, but doesn’t directly work side by side with them every day. There are many different possible arrangements. Again, if the employee is getting a competitive wage and the job coach is being paid by an outside source (such as a community voc rehab or disability organization) well, fine. But sometimes they arrange the wage to be split among the job coach and the employee. The employee gets less than minimum wage, and the job coach gets what is left over plus a supplement from the disability/voc rehab organization. So, job coach does half the job and gets a full wage, but employee does half the job and gets a substandard wage. Again, not fair.

I will mention here that I’ve heard that a lot of self advocates with cognitive disabilities are sick to death of the whole “greeter” shtick that goes on at a lot of big box stores. The job is mainly pretend, most of them don’t really do anything (offer directions or assistance or something), they are mostly a PR prop that says to customers, “see how nice we are? We allow this Disabled Special Person to smile at you. We are a great company because we make you feel warm inside!” Also, there is a saying that all people with cognitive disabilities are allowed to do is “food, floors, and flowers,” They talk of being tired of being placed in the McBusboy, janitorial, and greenhouse jobs so enough already and they want to branch out to something more creative. This is when you have a mediocre job broker vs. a really good and creative one. Another reason disabled folks sometimes work in packs is because job coaches get really comfortable with just a few employers and place everyone there. Or place many people together so they can share a job coach. The more people can get out there and be seen doing different kinds of productive work that they enjoy, the better.

As you have probably guessed, I strongly believe in competitive employment for people with disabilities, and I strongly believe that includes competitive wages. A day’s work is a day’s work and all people need and deserve a living wage. Now, when people cry “oh, but that’s not fair to the poor corporations!” Believe me, I’m crying for the poor, wittle corporations right along with you. How can they possibly afford to give a few disabled employees that might be a little slow or a little less productive a competitive wage when they could easily hire a nondisabled person who can work faster and easier for that lousy $6 bucks an hour? Maybe they can get it from their CEOs who are getting company cars and huge perks and having their assistants do their comp dry cleaning and errand running while they are roaming the country in private jets and having $500 ‘business dinners’ and buying executive ‘gifts’ with their no credit limit company black American express cards? Unless we are talking about a really small mom and pop joint, the money is there to pay decent wages to disabled folks. (Ironically here, the same corporate big wigs who bitch about the

ADA

and hiring the disabled for competitive wages are the same ones who bitch about entitlement programs such as SSI, yet then want the government to bail their corporations out of bankruptcy. And that catch-22 is called oppression, young onions.)

And that is sufficed to say that the vast majority of disabled folks, when appropriately accommodated are, in fact, more productive than their nondisabled counterparts. They usually have less absenteeism and turnover and are very committed to the job. The only exceptions to the productivity rule are usually when hiring folks with rather significant cognitive or physical disabilities. Not your run of the mill wheelchair users or amputees or whatnot.

I sometimes resent the fact that disabled people (mostly those with cognitive disabilities or more significant physical disabilities) have to have a nondisabled person represented by a “charitable organization” broker a job for them. Quite frankly, if I were to go out right now looking for a 9 to 5, that is what I would need at this point. There are very few job openings I could just pick up off the classifieds and go interview for anymore. So why can’t I advocate for myself and go in and carve out my own job? I could, but often that puts me in the position of looking like I’m vying for “special treatment,” and/or that I’m not a serious applicant for the job. I need a nondisabled third party that can be the go-between for negiations and give my run for the job the credibility of a “charitable organization” backing and pretty, feel good packaging.  That is the world we live in right now. And even for the brokers, things are tough out there. My ex-boss was a broker of sorts (she brokered for brokers, if you will), and she had horror stories of being laughed right out of corporate HR offices for even wasting their time with the notion that they would lower themselves to hire the disabled. I won’t mention any names [coughNIKEcough], but I guess if that is what it takes to get people out there and working, that’s where we are right now.

I think most people with disabilities would agree that the worst situation is the sheltered workshop scam. This is where disabled people are really getting exploited. Now someone is going to write to me and say, “Hey, my son works in a sheltered workshop and he loves it and he is protected and it is the only thing he can do and he gets a little cash so what is wrong with you?” I understand this is the reality that some people live with and I don’t blame anyone for doing what they have to do to survive or make due.  But that doesn’t make it a good thing, just the sorry best we’ve got for some people right now. And I think that it is a sad state of affairs when we warehouse folks and make them do menial repetitive tasks for sub minimum wage while mostly passing on their wages to low bid contractors or to service providers.

If you are unfamiliar, sheltered workshops employ people with disabilities to do mostly assembly line work. (But not always, hidden in the back of many of your Goodwill stores are sheltered workshop employees laundering and sorting your donations for sub minimum wage.) Anyway, besides the low pay, they cannot change jobs, advance, or—many times—quit without say so from some case manager or some such. The conflict of interest is that the sheltered workshop managers get their contracts by being able to offer the lowest bid to companies. (i.e. I once knew of a workshop that assembled the little sporks and napkin packets for KFC, another one manufactured the basketball netting for Spalding).

My point is, they NEED to keep the disabled employees there and working at low wages in order to keep their low bid contracts and thus make a profit (or in the nonprofit case, keep the administration employed and afloat.) There is no incentive to train these employees to get out into the community and find some kind of more substantial competitive employment. I had a colleague with mild cognitive disabilities. She was institutionalized for most of her childhood and then transferred to a sheltered workshop. At some point, the factory foreperson (a nondisabled person on full salary) quit suddenly. My colleague took on the job as acting foreperson for several months and handled the job quite successfully. However, when it came time to apply for a new foreperson, her application could not be accepted because she was a sheltered workshop employee and could not advance into the pay scale of the nondisabled supervisory role. So, in essence, here is where it really is slavery, or at the very least, exploited labor.

In general, I think any time there are people with disabilities working in visible ways in the community in competitive jobs along side nondisabled colleagues (for fair wages—inasmuch as they are fair for anyone); it is probably a good thing. Evil big box store issues aside, it is where we are right now and hopefully it is a stepping stone for more equitable working conditions to come.

Brainstorming

Right now the black cat is standing in front of my monitor trying to attack the letters as they type by. Luckily, I can turn off my monitor and type using only my hearing. Black cat is staying with me, now. D found her a few weeks ago about ready to die of starvation on his porch. We took her to the vet and she was healthy, just malnourished. So D had three cats for a while, Scrapper, Kai and this one. You couldn't swing a dead cat around that apartment without hitting a live one. Now I have Black Kitty. Black Kitty X. She has no name because her past has been stolen. Besides, she thinks her name is Kitty.

D is back in the Burn Center. After no luck getting in to a doctor, he called 911 on Thursday. I have talked to him a few times, but really don't know what is going on thus far. He got a PICC line put in (permanent IV port) and is on Vancomyacin for an infection. They are treating the two wounds and he may have some surgery done on one of them. He is in the Burn ICU so I cannot take the kids and go visit him. He feels better, though.

My father is here with the monstrosity dog, Abbey. So now I've got two kids, a cat and a dog underfoot. The good thing about Abbey is that she is a broom. She takes care of all the misplaced cheerios the kids throw on the floor. My dad should be able to take us to the hospital sometime this week. My dad was irked at me because the house was a mess when he got here. We are getting into that time of childhood when keeping the house in order is nearly impossible. The kids pull things out as fast as I can put them back. They pull things out of the dishwasher, they take trash out of the trashcan, they pull their clothes out of the drawers, everything, everywhere. I'm working on discipline with them, mostly working on them trying to do constructive things to help me. For example, I try to get them to hand me dishes from the dishwasher to put them away, and then (the hard part) get them to reverse. And I hand them spoons to put into the silverware basket. I like to do this better than just telling them, NO NO NO all the time. They follow my lead and do help me with these things. But its not like we are going faster than a snails pace. So now, I get to at least turn over the downstairs to my father. Yay!!! God, I'm sick of cleaning up that kitchen. It seems like that is all I do, feed the kids, clean the kitchen, repeat, go to D's, clean his kitchen, feed the kids, repeat.

So, D has all of the paperwork for the social worker that I need to hire a new attendant at the hospital. Hopefully I can get it and get it sent out later this week. That is the first step to hiring a new attendant. In the meantime, I have been brainstorming ways I can replace the income I am going to lose from the new attendant. She or he will probably be taking about 5 or 600 out of my pay per month.

I need to think of things I can do at home or that take little childcare. I need to think of things that are not high pressure deadline jobs that need large blocks of time. This would be something I could do an hour here, an hour or so there. Or maybe about three or four hours at a time after the kids go to bed. Here we go:

• I could take in another kid or two to babysit.
• I could look into respite care (NOT attendant care!) for adults with disabilities.
• I could try to get some writing/editing jobs off of elance.com.
• I could try to find an online class to teach or grade.
• I could tutor kids here in my home or at Sylvan Learning Center which is just down the street.
• I could see if the local ESD has any work that I could do from home. (Also, right down the street.)
• I could probably do some medical transcribing. My friend Nik's ex-wife does it and she is blind. I probably don't need much training.
• I could brush up on my Braille and do Braille transcribing. (This would take some studying up and a major Braille printer purchase.)
• I could start up my Acquara research business again and go back to contract research work for universities. (This would take a lot of upfront work and can be a bit stressful.)
• I could sell something?? I don't know if I'd be good at this at all. Like organic products or something.
• I could contact publishing houses for educational textbooks and see if they'd let me do some editing.
• I could be a Google researcher.
• I could design a class for Hadley School for the Blind and teach it.
• I could get Dooce to plug me on her website and blog for a living. (heh. yeah right.)
• I could lose 30 pounds and webcam myself cleaning the kitchen naked. (uh, not while my dad's in town.)
• I could lose 30 pounds and become a weight watchers group leader.
• I could buy myself a writer's market and start selling freelance work.
• I could see if I could write for any of the local papers.
• I could answer one of those work from home adds and stuff envelopes all day long. (I made a living in high school by putting update stickers on mutual fund prospecti, fun times.)
• I could make my kids become models and live off them because they are so damned cute!

Okay, I'm just getting tired and silly, now. I might add to this later. Any ideas?

My apology to the SAHMs of the World

I admit it. I was a bigot. I came from a working mom household. I always thought I'd be a working mom. I was one of those who thought things like, "I'm not going to stay home and serve my children like a maid and bake cookies for them after school." I was the one who thought things like, "What DO they DO all day? Don't they want to contribute to society? Do they just want to live off their husbands?" I had seen my mother juggle career and parenthood with my father often absent due to traveling for his job. I went to a babysitter from practically birth to about 9 years old, then I was a so-called latch-key kid the rest of my school years. We did eat a lot of hamburger helper. Our mom was not ever the room mother. She was not aware of when we had tests, what we wore to school that day, if we did our homework. We did do our own laundry when we could reach the washing machine and divided the housework equally among us every week. At conferences, my mom was the one who showed up in a business suit. My mom had an office with her name on a shiny wood nameplate outside the door. When someone's mother asked if my mom was a secretary, I looked at her, indignant, and said flatly, "No, she is a vice president." My mom had articles in the local paper about her. "A Horatio Alger Story: City Business Leader Started in Mail-room." My mom had no college degree, grew up in poverty, and became successful in the business world anyway. The expectation for us is that we would do the same, plus college. We were not to go and get our "MRS. degree and get married and waste our lives sitting at home with babies, depending on our husbands for everything."

So I went to college, got my degree, got another degree, worked for a while, and then happened to lose my job very close to the same time I got pregnant. This was a glitch in the road I had not planned on. It has been hard for me to get jobs as a disabled person. Someday I will write about all the horrors that happen when you get every interview you ever sent out a resume for, then walk in to the complete disrespect and discrimination of the interviewers when you have a guide dog with you. There is a 70% unemployment rate among disabled folks who want to work. I always considered myself lucky to be employed pretty consistently since I was about 12 years old. Then, the prospect of walking into interviews with a pregnant belly on top of the disability seemed too much for me to handle. I still had income from being D's CNA, but I would have no insurance. Because of my pre-existing conditions, insurance is impossible for me to get individually. So I chose not to apply for unemployment, and instead applied for disability. A very humiliating exercise, but it got me on medicare. (The kids, incidentally are on the State Child Health Insurance Program, children's health insurance for the working poor. I pay a sliding scale premium for that based on my CNA salary.) After that, I started looking into daycare for TWO infants so I might go back to work after they were born. GOOD GOD!!! How do women do it?? The local daycare centers that I could walk to were charging between $900-$1200 per month PER KID! No part-timers accepted. That would be $1800-$2400 per month! Do you know how much I made at my last job? Somewhere in between those two amounts.

So far, I have not been able to get my kids on the bus without help. We take the train quite easily, but two kids, a double stroller that must be folded, a diaper bag, etc. is too much for me to do. When they get old enough to walk, it will be fine, but for now, we are stuck to where I can walk or take the trains. So I have not been able to find cheaper daycare. Is there cheaper daycare?

Here is my favorite conversation on this subject. This is with my friend Niklas who is from Canada and grew up in Sweden:

Nik: So what is your stipend there in the states?

Me: What do you mean?

Nik: How much time off do you get paid for when you have kids?

Me: We don't get paid time off or a stipend here. We can take up to 12 weeks a year for family emergencies without pay.

Nik: But, no. I don't mean from the employer, from the government. How much do they give you for time off or for day care? Maybe you don't call it a stipend? But it is the money you get to stay at home for like, a year, with your kids and then a subsidy for daycare until the kids reach school-age.

Me: Nik. I'm telling you, We don't get any of that. The government does not pay women to stay home or to get daycare. EVER.

Nik: But what do the poor people do?

Me: Stay Poor.

Nik: So they don't give poor people healthcare, decent schools nor a Maternity stipend?

Me: No.

Nik: I mean, things aren't perfect here, but at least they don't treat us like animals.

So I found myself being a stay at home mom for all practical purposes. I still do CNA work for D (when he is not in the hospital) And you know what? Being a SAHM is WORK! I'm sorry to all the SAHMs I ever judged. I was wrong. And this was my revelation: (You will think, "ya DUH, stupid" after reading my revelation.) You have 8-10 hours of that child's day that you have to fill. Feeding, supervising, entertaining, educating, consoling, cleaning up after, laundering, etc. When you work, someone else does all this for the majority of your child's day. I'm not saying anything is wrong with that. But you have a parenting partner who is putting in the hours. Hopefully you have a good parenting partner, because it is a big chunk of your child's life.

Now, I have not turned around and started judging working moms. I still completely understand their point of view, and there are so many who don't have a choice anyway. I think that some women would shoot themselves in the head if they had to stay at home all day with their babies. They love them dearly, but they need that parenting partner to do what is best for their child. Others have no choice and hope for the best childcare for their children so they can put food in their kids' mouths. But I don't think you can say, "I work outside the home AND I'm a full-time mother," as a often heard snarky comment to SAHMs.  You may be thinking and being responsible for your children full-time, but face it, you are partnering with someone who fills those hours up and fulfills the needs of your child for a good chunk of their early life.

And this can be a great thing. My babysitter that I had from birth to age 9, is still in my life. She is in her 80's and she is part of my family. Having her when I was younger was like having a whole 'nother mother to love me. And it still is that way today. Some kids are lucky enough to get babysat by a grandparent or another good friend and family member. Some have devoted babysitters like I did. I'm sure some kids have a great time in daycare centers.

But when I went and toured the $1200/month per child daycare center, it just depressed me. A nice woman showed me all the safety features. I'm sure my kids would have been taken care of in a fire, that their fingers would not have been jammed in the doors, that their food would not have been mishandled, that they would not have been shaken or abused in any way there. But then they would be spending their days in a room that was probably 8' by 12' with 6 other children their same age and two very sweet and caring but very young women that had little education and got paid $7 an hour. They move to a different 8' by 12' room every year and have different teachers each time. She was shifty when I asked her about the turnover rate of her employees, but I've been to these places before and I know that you don't hold on to young people by giving them $7/hour and no benefits. The place was just LOUD, too, and quite chaotic. I know that goes with having lots of kids in a small space. That is okay for part of the day, but all day everyday for my preemies who have trouble with over-stimulation? Ugh. At the end when she told me the cost, I was almost relieved. I knew that there was no way it would make sense for me to pay that much right now, so SAHMhood started to make real practical sense.

And guess what? I like it! I don't mean that I've totally thrown all my career hopes away and I'll never go back to work. But for now, I am so happy that I get to be with my kids all day. Watching them develop is just magical. There is still teacher in me and so I actually have gotten out some of my earliest childhood Montessori books and develop little 2-10 minute activities for them to do. This gives me time with each of them and structures their day somewhat. I also have the luxury of volunteering at my church where I'm teaching Sunday School. I get time to take walks with the kids and work out. They go to on-site daycare when I work out, which gives them some social time away from me, and me from them. Coincidentally, I've become more food and earth conscious in the past few years. I have the opportunity now to do things I made fun of the SAHMs for doing. I garden. I sew things for the kids to wear and play with, I prepare fresh foods from scratch. No, you don't have to do these things to be a good mother, and many mother's can't, but I like the thought of being able to teach my children about local and organic foods and how whole foods are more nutritious and good for the environment instead of plopping down some Hamburger Helper just to get the kids fed. I like the thought of teaching them gardening and eating foods out of my (very small) backyard so they know where it comes from and why some others don't have enough. I like the thought that now I can show them some small ways that I try to be more sustainable and environmentally conscious with my choices. Can people do this and work? Probably. But I don't know if I could. Working takes a lot out of you. When I'm stressed and busy, I know me. I stop worrying about where the damn food came from and just eat whatever is convenient. I stop being so committed to reusing and recycling, I stop all thoughts of sewing my own comforters and t shirts for the kids. I just go to work, come home, am tired all the time, stressed out all the time. Now, I feel like I am doing what I am supposed to be doing.

Mothers, fathers, families of all types should get more support to raise families. We act in this country like raising children is some kind of personal indulgent hobby that you should be able to do on the side and on your own time with a little bit of your mad money. Raising children is not an individual thing. It takes a village blah, blah, blah... It is really something that affects all of us and that we are all responsible for. There should really be more support and respect for both working moms and stay at home moms.

So Stay at Home Moms, I'm sorry I judged you. Even if I don't think I ever did it out loud, you probably knew me or someone like me, and I was wrong.