Healthcare Reform, pt 1: A Personal Story.

This week, I’m going to be posting about Health care Reform. Later in the week*, I’ll post some other sorts of information- including some info from various MSM resources, some data about some of the misinformation out there, etc.

Today’s post isn’t about the financial, political, or practical points that matter to politicians though. Today’s post is about what it means to us as human beings, and about the personal stories that don’t get factored in when it comes time for a politician to vote. (Well. Sometimes they do. Sometimes.)

My opinion, to be up front, is pro-Health care Reform, and pro-Public Option. I think it’s the only ethically sound thing to do. But I know that while I’m not the only one that thinks so, there are plenty of people who think differently- and are equally or more so passionate about that opinion.

They have their stories about health care and Insurance. I, on the other hand, have mine. It’s a bit long, and very embarrassing at parts, but I think it’s important to share these things faults and all. I encourage you to share your experiences in the comments, or to link me to your experiences, whatever your opinion is.

My Story

When I lost my insurance- or rather, when the insurance company realized they didn’t have to cover me anymore- was when I was pursuing psych treatment. To be blunt, I was having suicidal Ideations but was too depressed to actually go through with any of them, sure that if I tried I would screw it up. My General Practitioner heard this and asked if I would go to the hospital if he referred me. After some debate, I agreed.

In the ER (which is where we had to go for psych intake) we sat in the little room for hours. The time had little to do with doubts about my need, and everything to do with insurance. Up until that point, I had been under my biological father’s insurance as per what had been worked out in the custody agreement years before. I had been going to school up until 10 months before, and so was at that point still covered- or so we thought.

My father’s insurance wouldn’t accept the local hospital’s psych ward, despite having accepted it two years previously. They wanted me at first to go to C___ Psych, which I refused on the basis of having received poor and inappropriate treatment there in the past and because my sister had as well. Not to mention the untold number of other people who have chimed in that they received poor treatment there as well (That’s a story for another time).

Next they wanted me to go to Mercer, over an hour away- and I would have to be transported by Ambulance, which they would not cover, and I wouldn’t be allowed to have my mother with me to help me explain to strangers what was going on when words failed me. I was uncomfortable with this, and someone started the paperwork and asking some questions about transport. I was fairly insistent that I wanted the ward in the local hospital as that had been the arrangement I had made with my GP, but my mother spent a while trying to get me adjusted in case they really did have to send me to Mercer- an hour away.

After a while an attendant came in. She was very nice, but the news she had to tell us was not. It seems that after having insisted on a different site for treatment, the insurance company had suddenly realized that I was outside of the time span they needed to cover me under as I had not attended classes in the last 6 (or was it 9? I get them confused a lot when it’s an image in my head- which it usually is if it’s from paper work!) months.

Mid intake, I had gone through fighting with an insurance company over the site of treatment to not having insurance at all. I went into the ward associated with the local hospital not knowing how I was going to be able to pay for the treatment I was receiving, and not wanting to sign over Power of Attorney to the hospital in order to receive hospital funding.

(PoA was a big issue at the time for me- my step-grandmother had lost everything fairly recently due to her PoA of her would-be common-law husband being voided when she went into an involuntary commitment after seeking medical treatment. Again, a story for another time, and one that raises a lot of concerns about Elder Care and Mental Health.)

Honestly, My preoccupation with how to deal with it influenced my treatment a lot- I had something to focus on, and was demanding my rights, which means I was no longer suicidal. The doctor ignored what my condition had been on intake because by he time he saw me the next day, I was anxious about how my treatment would be managed instead of wanting to die. While it’s good that I didn’t want to die anymore, it means that my treatment wasn’t for what I went in there for, and the underlying issues were not dealt with.

After I got out, it wasn’t long before I was getting phone calls and letters about how I needed a way to pay for my treatment. At one point I shut down completely during a phone call with the financial people and started sobbing and shrieking. (Embarrassing. Memorable, but Embarrassing.) My mother grabbed the phone and told the woman on the other end that I was obviously still mentally ill and not in a position to take care of that right then.

I’ve also been reluctant to seek treatment due to this experience- even for medical issues rather than psych ones. It took me until I had a large ulcer on my skin from a bacterial infection this spring to go in, and it ended up being pretty horrible. I now have to be careful about my health because of that situation.

I still am trying to pay this off, and while I generally don’t do the sobbing any more, I have a script I have to use to get through those phone calls. Some days I won’t pick up the phone if the number doesn’t have a name associated with it in my cell because I don’t have answers for them. I’ve put money towards it when I’ve had money, but I lost my job in February. I charged off my bank account by letting it continue paying towards it and another debt rather than saving for food. Anxiety about not knowing how to pay off not dying is a near daily occurrence for me.

Thankfully, I have a happy ending of sorts in that I qualify for health care since I’m unemployed and in the process of applying for disability. It won’t take care of my past debts, but it does mean I can now get medical care, and in fact am obligated to do so because of the Disability status. I don’t know what will happen if my Disability case gets denied- I’ll probably plunge back into the world of being unable to go to the doctor.

For many Americans, though, this isn’t the case. Especially those with disabilities- especially those who wish to work and are able to. A woman on an E-mail list shared this thought, and I think it sums up the current system quite well:

The current system demands that either people be very highly functional so they can gain employment somewhere that provides medical insurance that covers pre-existing conditions, or live in poverty, in order to get medical coverage.

There is no middle ground.**

*I’m using the definition of week creatively to mean “the next 7 days” rather than “The set of time observed in western culture as Sunday through Saturday.”
** Has been edited to remove personal info and structure. To the woman that said this: let me know if you’d like me to credit you openly.

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ASA York to Take Down Billboards

Earlier today, ASAN sent ASA York the following letter:

To the Autism Society of York, Pennsylvania:

The York, PA Autism Society has a well established history of working to advance understanding and support for families in the York and Adams county area. Your involvement with the HOPE playground, your extensive Spanish language resource list and your other activities set positive examples for other organizations throughout Pennsylvania. It is with this history of positive efforts in mind that we are forced to express our grave concern after having been contacted by a number of Autistic adults and family members about your current billboard campaign depicting Autistic children as kidnapping victims.

For decades, autism has been regrettably associated with fear and stigma. In the early years of the autism community, Bruno Bettelheim’s characterization of mothers of Autistic children as at fault for their child’s neurology ruined lives. In later decades, the same fear, stigma and constant search for blame persist even as science has discredited that particular causation theory. As we, Autistic adults and youth ourselves, attempt to assert our voices in the national conversation about us, we find ourselves characterized by those who often speak on our behalf as though we are burdens on society and individuals devoid of the full measure of personhood and humanity. Such mischaracterization threatens our efforts to be included in our homes, our schools, our communities and our collective society. By making the autism message one of fear, stigma and hostage-taking rather than one of civil rights, inclusion and support for all, our desire to be recognized as full and equal citizens in our communities is hurt.

The use of stolen-child imagery is one of many common motifs in autism awareness advertising. Unfortunately, it serves to send a message that Autistic people are less than fully present in our own bodies and are less than fully human. Such characterizations are frequently utilized to justify violence, prejudice and segregation against Autistic adults and children. The autism and Autistic communities deserve better than this.

It is due to these concerns that we respectfully request that the “Kidnapped” bill boards be taken down. We stand ready to work with you, the Autistic community of Pennsylvania, and any other interested parties to formulate an ethical replacement that sends a message of hope and support to Autistic people and our families rather than one of fear and dehumanization. Whatever awareness these billboards may bring, it is more than outweighed by the stigma and ignorance they add to a public conversation about autism that is already too full of such things. We believe that, working together, a better solution can be found.

Due to the public impact- locally and throughout Pennsylvania – we request a response no later than three business days (Thursday, August 20th). I can be contacted at aneeman@autisticadvocacy.org and by phone at 732.763.5530. Our Pennsylvania director can be reached at srobertson@autisticadvocacy.org. We request that you include him in your response.

Sincerely,

Ari Ne’eman
President
Autistic Self-Advocacy Network

Not long after, ASA York replied.

Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,
Amy Wallace
President ASA York

Short version: ASA York will be removing the billboards, thanks to the efforts of a number of people e-mailing and calling them this weekend. We have been able to join together as a community to voice our concern, and were heard. In a single weekend. How cool is that?

If you’d like to thank Amy Wallace for her prompt response that answered our concerns, her e-mail is amywallace3@gmail.com . Considering some of the local community projects that ASA York has participated in, it looks like we could see more community involvement to come.

York, PA ASA’s Billboard Blunder

Some of you might remember the Ransom Note Campaign that NYU Child Study Center ran briefly in December of 2007. Briefly because the disability community, 22 Organizations including ASAN, objected to conditions ranging from Autism to ADHD to Depression being depicted as kidnapping or possessing children. They were swiftly removed.

And it got a good amount of publicity, both within the disability community and in the MSM. A victory won, and after such coverage It should be obvious that this sort of analogy is inappropriate at best, damaging at worse.

I’d like you to meet York county, PA’s ASA chapter. Or rather, thanks to Club 166’s post,(and subsequent letter), their most recent billboard:

want a clearer image? well, it’s up on their website, too, with the oh-so-descriptive note of “Several new billboards can be seen around York….”:

Hm. Okay, so it’s a parent quote, but why would this seem like a good idea in light of recent events? Even if this is something the parent said out of desperation at a support group meeting, why would it be okay to plaster on a billboard where everyone could see- including the children whose lives it is speaking so derisively about? (I’m leaving alone the larger question of why any parent dealing with ANY child with a disability feels so alienated as to feel this desperate for now.)

Right now, I’m working with ASAN to gather more information and organize a PA reaction to this. We are hoping to get them to take these billboards down- and hopefully to understand why they weren’t appropriate in the first place.

Right now, we are in the first part of this process- ASAN has sent a letter to ASA about their York chapter and we’re working on one to ASA-York to be sent in the next few hours.

If you, as an individual or as part of an organization, would like to contact ASA York to let them know how you feel about the bill board, here’s their contact info:

e-mail: pa-york@autismsocietyofamerica.org
e-mail 2: info@autismyork.org
Phone Number: 717-801-1272

Please remember to be polite when contacting them. If you choose to call, make sure it’s in normal business hours EST (New York Time) and be polite- no foul language, etc. Just a straight forward statement of complaint, short and sweet.

I’ll keep you updated if I discover any more information, and on any further actions we attempt.

EDIT: Since posting this entry, the announcement on the launch of the billboards has been purged from the ASA-York site. If I obtain further info, I will post it tomorrow in a new entry.

Adam

Back in early July (the 6th, to be exact) I went to a showing of Adam in DC at the MPAA building. There was a number of people in attendance, and most of the ones that I knew were involved in the Autism/Advocacy community.

I liked the movie itself a good bit. Adam is about a young man and a young woman who fall in love- the twist here that the young man, the titular Adam, has Asperger’s Syndrome. For much of the film we follow Beth (the young woman) as she meets and then starts to fall for Adam while dealing with disapproval from co-workers, friends, and parents. It was cute for some parts, and though it is billed as a Romantic Comedy I found it to be more of a Dramatic Romance. (This sentiment has been expressed by others, such as Jake Crosby*.) There was a lot covered here, and a lot of the comedy was of a more NT nature.

At the screening itself we were asked what seemed to be standing out to us about the film. The most common sentiment was about how Adam is the only on-spectrum person we see in the movie; our worries about Aspergers becoming the new “Magic Negro” in film (ironic, considering the character’s only friend seems to be a man who helps him with certain things and whose conversations were similar enough to the trope); and that the character of Adam simply h ad too many traits for one person.

As more and more people got in to see the movie, E-mail lists exploded. (Not literally of course!) Each person on spectrum that watched had problems with different aspects of Adam’s character- often the same aspects that others most strongly identified with. As a community, we Identified our number one issue- that Adam was too obviously a composite character.

(Some blog** reviews: Sister Sunshine’s, Abledbody, Aspie perspective’s not-review, Autisticcat’s Not-review, Aspieteacher’s review, Note: though as you can see I’m not posting spoilers for the movie, some of these reviews do.)

In the end, though, it’s a movie I- and others- want to have seen. I know of at least two Canadian Autistic friends on Twitter who want to get a showing locally at some point and who I’ve been actively communicating with. Right now Adam is on a limited release, and is releasing to a gradually wider audience over the next month. (If you’d like to know when the release nearest you is scheduled, Foxsearchlight- the distributor- has a list of anticipated release dates.)

Currently, the “wide” release date shows mostly major cities, but not everyone lives in major cities. The nearest anticipated release to my hometown is in Pittsburgh- around a 2 hour drive each way. And the thing is that the people I want most to see this are unlikely to travel that far for it. These are the Parents who crave something positive about the adult their child might grow into someday and the employers who don’t know what is up with that one employee. The girlfriend who doesn’t know what she’s doing and the young man who doesn’t identify himself yet. The young adult who doesn’t have the support structure he or she needs to enable a ride so far- and doesn’t know how to develop it.

Those are all the least likely to travel two hours to see a movie for various reason, be they the time away from the home or office, not seeing enough relevance for that sort of trip, or not being able to arrange the transportation. But they are the ones that will benefit the most from watching this movie, not the ones who have been hyping it and have the means to travel that far.

So I, and some others, are looking for ways to push for a local showing, even if it’s only a one-time showing. It’s why we are leaving comments about our interest in a wider release on the distributor’s page. It’s why we are reaching out to the local groups for autistic and for parents and why we are nervously approaching the manager’s desk at the theatres. It’s why we are tweeting about it, why we are talking about it on facebook- or making snide remarks about the NT-biased quiz- and myspace, why we are hyping it.

Because there IS a segment of society that needs the exposure that this movie gives, but won’t get it unless we do something.

Consider this my asking you to join us in getting this to local theatres. I’ll be asking the Movies at Meadville if they’d consider having Adam as a weekend showing this fall, and have been asking others to do the same in their locally run theatres. I’ll be talking to the support groups in Venango and Crawford counties about having them express interest in a showing, in perhaps going in as groups. Maybe I’ll get up the courage to ask the meadville Unitarian church about it.

Remember, the more interest that is drummed up, the wider the release gets, and the more people who see it and start to ask questions about their perspective of who we are.

* Please note, just because I’m linking to an article doesn’t mean I agree with the individual in all or any aspects other than explicitly mentioned, and I might even have some major philiosophical issues with them outside of the context in which they are mentioned. I feel, though, that my moral obligation to share information outweighs those differences in this specific context.
** Got a review? Let me know! I’m always looking for more info for people. Also, the not reviews are reactions to the publicity that are relevant to the discussion but by people who are anticipating seeing the movie.

And here’s a Trailer for your dose of video clip: