Working while on SSI. What a pain in the ass

This blog entry was inspired by this blog entry.



On the one hand the social security administration wants people to get off SSI and back to work. On the other hand, there are so many hassles and red tape that they make it hard to get to work. Here is the kind of crap I have to deal with

I work a 12 hour a week job at Target stocking the shelves. I have to report my income to the social security administration. They then use that income to determine my SSI payment. My SSI payment is based on my income TWO MONTHS AGO. Sometimes at work we finish early so I end up leaving work at 8am instead of the usual 9am. I also sometimes call in sick to work because of my disability. So if I am getting an SSI payment based on 12 hours a weeks pay, and I end up working fewer hours this month, you do the math. On top of that, if my current SSI payment is greater than it should be based on my current months earning, then I have an overpayment. They then cut back subsequent SSI payments to pay back the overpayment. At my job I get payed every 2 weeks. So sometimes I get 3 paychecks per month. For example. Next month I will get 3 paychecks. But, my last paycheck will be on the LAST day of the month. But, since my SSI payment will not be what it should be, based on that months earning, I will get an overpayment. Currently they are withholding some of my SSI payments due to an overpayment. The overpayment was because I got 3 paychecks that month. So after February I will have my SSI cut back to cover 2 overpayments. I could try and argue with them that I can't afford to pay back the overpayment. But I don't know if I want to bother with the hassles and red tape associated with that.

Given the difficulties I face at my job I have been tempted to quit. But, I can't. If I tell them that I quit my job, will they then pay me my full SSI payment next month? I don't know. But my guess is, probably not. Especially since I have those overpayments. Additionaly, if I do quit. I would probably have to jump through fiery hoops to demonstrate to them that I quit because of my disability.

Some people seem to think that being on SSI is great. It's free money after all. Well let me tell you something, the money isn't free. There are whole lot of hassles and red tape that come along with it. If you can get by without SSI, I would do that.

I am not normal

It seems that some people with disabilities want people see them as normal. They want to be seen as normal people who just do things differently then everyone else. I for one am NOT normal. In this case I am defining normal as what most people in society are. In our society most people are Neurotypical (NT), that is someone who isn't autistic. My ways of experiencing the world are not the norm. My body language and facial expressions are not the norm. My behaviors are not the norm. I am not a normal person and I don't wish to be seen as one.

Being normal is to much hassle. Being normal requires me to do things which are abnormal for me. Being normal requires me to stop doing things which are normal for me. Being normal requires me to put forth extra effort to do things that come easily for normal people.

I am not a normal person, so don't treat me like one. Treat me like a unique individual. Take the time to get to know me. Take the time to get to know about the issues I deal with because of my disability. Don't assume that because "you read a book on asperger's" or "my friends brother has asperger's" that you know about asperger's and what I have to deal with. Most importantly, if you don't know, ASK!

I am not normal. I never have been and I never will be. And I am proud of it!

The power of bitching

Here is a story relaid to me by my late grandmother. This illustrates how we can get the accommodations we need if we complain enough to the right people.

My grandmother was living in Mexico. She had to use a walker. Whenever her chauffeur would drive her to the grocery store he would park in the disabled parking spot. Unfortunately she was frequently finding the parking spot occupied by able bodied people. So she complained to the store management. The store management did something about it. If I remember right they had a chain strung across the parking spot. Whenever she needed to park there someone would come out and move the chain.

This goes to show what we can do if we bitch loudly enough at the right people. If we need some kind of accommodation we should ask for it. Now of course depending on the situation we may run into the ADA. But if we can circumvent the ADA by going directly to the right person it can sometimes be easier to get what we need.

Here is a personal example I mentioned in my previous post. I couple of years back I took a writing class at a college here. In that class we had writing assignments to do in class. Handwriting for me is a chore. So I asked the teacher if I could use my laptop and email her the assignments. She said that was fine. If I had gone through the office of students with disabilities, who knows what kind of red tape I would have had to deal with.

In general I think it's best to go directly to the person first. If you can't get your accommodations that way, then go through whatever office or agency you need to.

unconventional assistive devices

When most people think of assistance devices for people with disabilities they tend to think of things like wheelchairs and blind canes. There are however devices that can be useful to people with disabilities which aren't generally associated with disabilities.

A great example in my life is my PDA (personal digital assistant, palm pilot). These are very handy gadgets for people with Asperger's. We have a tendency to have difficulties with self structuring and dealing with time. The appointment book feature is quite handy for these things. I can put in my appointments along with an alarm to remind me. This can be taken a step further and used to structure your whole day. You can be sitting around playing on the computer when your PDA alarm goes off telling you it's time to do X. Unfortunately I am not to good about this last part. I aought to have alarms for things like brushing my teeth, taking out the garbage, doing my laundry ETC.

Another quite handy feature is the list feature. Sometimes tasks can be overwhelming for people with Asperger's. The solution is to break the task down into it's parts and pieces and do each one individually in sequence. With the list function I can have all the steps of a task and check them off as I do them. This way I can be sure not to forget anything. I use this when I am packing a suitcase to make sure I have packed everything.

Another device I use is my ipod. It didn't really occur to me until recently that I have been using my ipod as a disability aid. Although my social anxiety has improved quite a bit, I still have to deal with it sometimes. Particularly on a long bus rid when the bus is packed. Listening to music helps out with the anxiety. Another issue I have is auditory sensitivities. Using my ipod helps cancel out the all the background noise that bothers me.

Another device which could be useful for autistics and other people with disabilities is the XO laptop http://www.laptop.org/ This is the laptop that is being given to children in 3rd world countries. A friend of mine has one. Seeing his XO and thinking of getting one for my self got me thinking about possible disability uses for it.

Text to speech (TTS) software could allow it to function like the keyboard used by people with verbal communications difficulties. TTS can also be useful for people with a reading disability. Instead of having to struggle through some article online, you could simply have the computer read it to you.

The XO also has a chat feature where you can chat with other people using an XO. It's basically the same as instant messaging or a chat room. That could be quite useful to autistic people. I know for me interacting with text on a screen can be easier at times than face to face.

It's use as a laptop can also be quite useful. I have some fine motor control difficulties, so handwriting for me is a chore and my handwriting is sloppy as a result. A couple years back I took a writing class where we did writing assignments in class. I explained my situation to the teacher and asked if I could use my laptop and email her the assignments. She said that was fine. Had I not had a laptop I would have struggled though that class.

I am sure there are other disability application for the XO, but these are the ones that came to mind

Unconventional disability aids like those above have some advantages and disadvantages. One advantage is that since they aren't sold as disability aids they are widely available, one exception being the XO. Additionally you wont have to worry about having to pay way to much at a medical supply house. The downside is that because they aren't intended as disability aids, it would be very had to get insurance to pay for the. A friend of mine had to go through hell and high water to get medicaid to pay for his wheelchair. I can only imagine how hard it would be to get medicaid to pay for a PDA or ipod.

Negative representatoins of autism in the media

I have seen many negative representations of autistic people in the media. But lately I have found some that are far worse than those I have seen in the past.

The other day I was wandering around the net when I stumbled across a myspace page with a youtube video of a public service announcement by the group, cure autism now. This PSA was so utterly offensive to me that I just sat there with my mouth hanging open. In the begining you have a group of people each saying a portion of the following

"Every 21 minutes a child is diagnosed with autism. Autism is like this. It's like someone sneaks into your house in the middle of the night and takes your baby's mind and personality and leaves their bewildered body behind. If a child was actually being kidnapped every 21 minutes. We'd have a national emergency. We do. it's called autism."

Here is the offending . video

The only word to describe that video is dehumanizing. It makes it seem like Autistic people have no mind or personality. Anyone who has taken the time to get to know someone with Autism knows full well that we have a mind and personality. Livestock handling equipment designed by Dr.Temple Grandin is found in 2/3's of the livestock handling facilities in the US. Thats pretty impressive for someone with "no mind". If you couldn't tell I was being sarcastic.

The kidnapping theme is also present in a new campaign called the "ransom notes" campaign. This is a new campaign by the NYU Child Study Center. The campaign will be a series of ads on billboards, kiosks, magazines and online. The ads show a picture of a ransom note signed by Autism, Asperger syndrome or ADHD.

The Asperger's ad has a note that reads "We have your son. we are destroying his ability for social interaction and driving him into a life of social isolation. It's up to you now. [signed] Asperger Syndrome"

The ads for Autism and ADHD are equally as vile. You can read more about it here

We need to let people know just how offended we are by these sorts of depictions of disabilities. We need to let the people making these ads know just how offended we are. If we see the ad on a kiosk at the mall we need to notify the management of the mall about how offended we are. We should also get a petition going to get the ads removed from such places. If we see the ads in a newspaper or magazine we need to write a letter to the editor expressing or opinions of the ads. We need to educate the general public about disabilities so people can understand why we find such things so offensive.

We must not sit back idly while people without disabilities are promoting dehumanizing messages about us, just to get people to donate money to their organization.

[rant mode on]

I am sick and tired of all the pity and fear mongering used by autism groups to elicit donations. These groups aren't interested in helping us. They want to wipe us off the face of the planet. But people happily give them their money to "help" people with Autism. Supporting eugenics and genocide does NOT help us. If an organization were funding a "cure" for blackness, how many people would donate money to help "those poor people with blackness"? NO there would be a national outrage if such things were to happen. Groups like the NAACP have been fighting for years against stereotypes of african americans in the media. But stereotypes of people with Autism and other disabilities are still fair game. It's time we rise up against our oppressors. We need to make it clear to them that they can no longer exploit us for their gain. No more Jerry Lewis telethons! No more fear mongering autism PSA's! No more pitiful depictions of people with disabilities!

[we now return you to your regularly scheduled blog]

So please send a letter or email or something to the NYU Child Study Center. Their contact info is in the link above.

Because we shouldn't have to

There is a scene in xmen 2 that illustrates an issue with people with disabilities particularly those with Asperger's. Night crawler says to Mystique "They say you can imitate anyone. Even their voice" Mystique replies in the afermative to which night crawler responds. "Then why not stay in disguise all the time? You know — look like everyone else?" Mystique replies. "Because we shouldn’t have to".

Visible traits of Asperger's generally get one labeled "stupid", "lazy", "weird", and such. Generally such traits are not seen by the general public as the product of a disability. Due to the negative social repercussions of such autistic traits. Many people with Asperger's have sought to hide, eleminate, or change their traits to make them appear more normal. Also, past treatments for autism have sought to make the autistic person seem as normal as possible .The fact of the mater is, we aren't "normal". So we shouldn't have to change or hide things to approximate normalcy.

Slowly I have begun to care less about what people think about my visible autistic traits. There are those traits that I can't do much about because they are neurological. But there are those which I can change and many do. But I shouldn't have to change them in order to appear more normal.

Stimming is a great example of this. The classical autistic stims are hand/finger flapping and rocking back and forth. Stims are nothing more than "nervous habit", they just present differently than they do in neurotypicals. Additionally, a classical autistic stim may fill a need that something else can't. Many people with Asperger's have traded in their preferred stim for a more socially acceptable one. I have decided not to do that. If people think it's weird that I am flapping my hands/fingers, too bad. That said, I am still somewhat self conscious about stimming, but less so that in the past. If someone inquires about the hand flapping, I can always explain it.

I also have have motor tics. These can be as mild as some simple facial tics, to my head jerking around. There isn't much I can do to stop the tics, so there isn't any point worrying about what people are going to think about it. The anxiety and mental energy expenditure from worrying about it is not worth it.

Ultimately we should strive for a society that is more accepting of people who are different. For now visible traits of autism can have negative social repercussions. But I have decided not to to hide or change them, simply "Because we shouldn’t have to".