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Sunday, February 25, 2007

Even bigger picture

Before I knew about the field of organizational psychology I quit being an artist and started off to find a career I could feel good about making money at. On this search I got a job at a group home for juvenile delinquent boys ages 13-19 called Our House. It was an amazing place started by a former flower child and innovative peace loving thinker who devised a method of holding the boys accountable for their actions that did not involve any physical take downs or restraints. The doors were not even locked ever. It was a great experience. I started a GED program and taught art and Art and Math classes as well as set up a computer room for their use and to learn basic computer programs. They were usually with us for 4 –6 months and during that time you would see them get to become kids again.

The sad part was that they would be sent home to the same drug addicted parents or rough neighborhood and most of the time you would hear that they were back in lock up or worse. I realized it would burn me out to be working at this level for the long term and decided that I wanted to work with whole systems to change them for the better.

The focus on the big picture of our society’s mistreatment of the disabled seem to be missing from the conversation that starts with the question, “Should we resuscitate preemies and who should decide?” and travels through to asking, “What happened to them after age 2?” But is has not yet landed on my question which is,

“What if society actually supported and accepted its disabled as a valued and important part?”

This is a discussion of isms.

Disability is an ism. The fact is that society does not tolerate isms well, especially those in the minority. It balks at those that do not meet up to aesthetic standards of beauty and usefulness. Of course these aesthetics are shallow and ruled by ignorance and an assortment of negative drives. A critical cause behind outcomes like the case of Ashley Treatment occur because society is in general not supportive of people with disabilities in just the same way that corporate America is discriminatory against women and people of color. Now of course there are tons of people who are supportive of the disabled - but on the whole society is not. I know this because when people or organizations are really committed to something and supportive of it they act on it and put money into it. Like I said, many NICUs are the star earners/cash cows for hospitals so the bias is to keep em running and keep expanding our knowledge of neonatology – which is a great thing. But it could also explain whey there is so little hoopla and understanding of the outcomes of former preemies who are at home and needing support and not bringing in huge sums for healthcare providers for critical treatments. I have found that I have to fight insurance for the chronic conditions that Ellie has. Cerebral Palsy for instance is a chronic condition and requires lots of equipment, which I have to jump through a lot of hoops to get.

I have also found that funding for early intervention programs and care attendant hours for children with special needs whose parents are in great need of some help is very limited and getting ever more so as congress cuts back each year. Why is special education in mainstream public schools such a problem (for a great blog on this check out
Charles Fox)? Most school districts don’t want to pay for special needs education and nickel and dime and under deliver the child and parents ad nauseam.

It seems that the amount of support diminishes as the disabled person ages. There also seems to be a hierarchy of special needs that get funded. Blindness gets the most money and then deafness. I think brain damage and cerebral palsy are at the bottom. So the more disabled you are the less help you will get over the course of your lifetime.

There needs to be discussion about changing the system that has a dropping continuum of support based on the assumption that people with cp can only be helped up until age 3 or 4 or in child hood. The assumption also holds that the disabled have nothing to contribute and that they are a drain on the system. God this bothers me and couldn’t be less true. I have read so many blogs by disabled people who are absolutely brilliant but can’t get a job to literally save their lives. It’s so ass backwards.

It is the ignorance and discrimination towards the disabled that sets the back drop for the discussion about preemies and their outcomes whether it’s acknowledged openly or not. I think it is why the preemie myths prevail because we don’t want to deal with our ignorance on the whole of disability. I read on one blog of a disabled person that disability was most simply a matter of equal access to all parts of society. If there were equal access there would not be disability or racism or chauvinism or any number of isms.

Also it is important to realize that people with disabilities have a lot to offer the world and are often not given the chance.

It’s the mindset that needs to change.

When you have a child who then turns out to be disabled, your mind set is forced to change. And of course you love them. So there you are, loving this person who is different from most of your friends kids. But you think they are great and they are and they teach you so much and you change at the deepest level. This is the context I am coming from when I discuss Ellie and how great my life is because of her. Because of her I have learned a new language and with it gained an entirely new perspective I could not have understood any other way. I am so much better even for the wear and tear.


The scary part is that the backdrop for Ellie’s life is a world where the disabled are discriminated against - a lot. And that is terrifying to me. I want people to read our blog and be able to understand that disability has many faces and many gifts. This is not trying to make lemonade out of lemons – it’s just the truth.

14 comments:

Jacqui said...

You're on a roll Kathryn!

I've been reading a lot of the discussion and wondering about the chicken and the egg - which one comes first. Do we not save extreme prems because we don't have the facitilities for high care needs later on? To me, these services are a fundamental right and I know that it will become an issue here next election.

We have legislation in place here that people with disabilities are encouraged to work for 15 hours per week (or otherwise they don't get the pension). Government jobs in particular have to be given to a person with a disability if they have the appropriate qualification - i wonder how often this works in reality. I had a discussion one day with a young woman who had CP. She was telling me about her best friend (a guy) who also had CP and had been to uni and got a degree in social work. He applied for a job as a social worker with our service provider as he is able to give real life experience to the job only to be knocked back because . . . he couldn't drive. WTF?

I recently saw figures (forgive my sleep deprived brain) on how much it costs to keep someone locked up in prison each year. It was far in excess of what it would cost to provide equipment, physio, OT and speech to a child each year. To me, it just didn't seem right that the governments are happy to spend so much on incarcerated people and yet, cut back services for people with disabilities.

Our physio has just done a paper on how the school system is failing our children. It isn't published yet and I can't wait to read it. I'm going to link it once it is published to my site (may be a while though).

Love,
Jacqui

Sorry for the disjointed comment - Master C has interrupted me about 10 times while I wrote this!

Lori said...

Kathryn,

Once again, you impress me with your ability to share your personal reality. More and more I am understanding what mothers like you, and Claire, and many others are trying to communicate. You not only want the challenges your child faces to be acknowledged, but you want the unique spark that she brings to the world to be given value as well. I am glad you understood my point when I said that my angel babies are still my miracles, and bless my life everyday. That is not something not everyone could understand. But I think you can, because there is a little bit of a parallel with your life with Ellie. From the outside people might see a damaged child, and speculate that your relationship is fraught with difficulties and stress. But you know all the wonder and joy she has brought to your life, and so in the end the challenges pale in comparison. I don't have the priviledge of getting to have an ongoing physical relationship with my twins, but I absolutely know that our relationship continues and grows in ways no one else could possibly understand. As you and Ellie have learned, love knows no boundaries- not even time and space.

I have had the honor of meeting many mothers whose children have either already passed, or are terminal, and the interesting thing is that many of them would have a similar message as yours. They want people to understand that they do not view their child's life and very being as a tragedy. Their deaths may be tragic, but their lives were a blessing. You might be interested in checking out the website of a very special organization that I have the great priviledge of being involved with. Go to www.soulumination.org
I promise, you won't be sorry.

Also, there are a whole lot of uncomfortable topics and people our society could do a much better job supporting. You are absolutely right that the disabled are right there at the top of the list!

Lori

Claire said...

Now this is a point of view I can heartily endorse. It touches on what I have been struggling to say – that it isn’t our children that are the problem, it is society’s failure to make a place for them which is the problem. I am still struggling to find a way of expressing this, or figuring out why it is so. Whether it is because advanced societies are becoming more selfish and individualistic, because definitions of a “good life” are becoming more materialistic or because of some atavistic fear - I do not know. It is a cliche in England that we follow the US model about 10 years late and this is why I have found these recent discussions so scary. I am no expert, but I think attitudes here are slightly more liberal – a law has been introduced to make access to public buildings compulsory (to a lot of moans about the expense). Most of the buses in London have been made wheelchair accessible (to the delight of mothers with buggies.) On the other hand, I think there is a quiet consensus that neonatalists should not try too hard to save very premature babies, the Health Service is falling apart, “Inclusion” into mainstream schools has been underfunded and the special education system wrecked as a consequence of poorly thought out if well meaning policies. Their is a fairly vocal disability rights movement, but I’m not sure how effective it is. My point has been that to argue for non-resuscitation and to stress the hardships of our lives is a discourse that is easily understood – by policy makers who do not want to deal with the problem and society at large who just wish we would go away. That schools would be “swamped” by all these non-miracle babies is to me a dreadful argument, but one that is very easily grasped, and the solution seems so simple. To talk about what is positive is harder and more nebulous – we can so easily be dismissed as “brave” – or deluded. You know – and I know – that losing that fear of “difference”, of realising that life is more complex, stranger and larger than we had expected is not a delusion. I believe a society that put compassion, acceptance and inclusion before earning power would be gaining, not losing – though I am not holding my breath. This is why I got so cross about the “mental illness” strand of the debate – is depression or whatever a reaction to or caused by a damaged brain or by living in a society that thinks it would have been better if you hadn’t been born? Some of the arguments about ADHD suggest that it is an unreasonable and unrealistic desire by adults that children should stop behaving like children and a tendency to medicalise behaviours which is responsible for its frequent diagnosis at least some of the time.
Being a compulsive browser of blogs, today I came across a quote from St. Augustine which seems appropriate here, so I’m going to pinch it: “Hope has two beautiful daughters. Their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.”
I can manage the anger well enough.

Ryn Tales said...

Hi Jacqui - I know - this issue has really gotten under my skin so to speak. I know you know this, but to everyone else for the record I don't think we should NOT save extreme prems because of the lack of services for the disabled. On the contrary. This post is about the fact that there should be more services for them.

Jacqui makes some excellent points and I can't wait to read her physios paper.

Kathryn

Ryn Tales said...

Hi Lori, You and I see eye to eye in more ways than one. This is another point about the mother/father child bond in that it isn't just a physical one but a spiritual one of soul to soul. Ellie may never say, "I love you mama." She may die before me. All of that is difficult to say the least. But the bond of love we have is forever and transcends all physical boundaries. I KNOW what she wants, I GET where she is coming from in ways people who don't have that connection with her can't understand. Just like you on a higher level are in touch with your twins.

I will check out that org - thanks for the link. There is a book that captures that soul to soul connection called Journey of Souls by a psychiatrist who did regression hypnosis and accidentally one day regressed a patient to a time between their life times. You might really like it.

Once again, great to have your voice here.
Kathryn

Ryn Tales said...

Claire-- you bring up so many good points - where to start?

Ok - i think our society is technologically advanced but somehow these advancements are not keeping pace with value systems. When there were not these advancements everyone was needed for survival. A person who could not walk could may spin thread and help that way, etc. This said I an no Ludite and am glad for all the technology that saved Ellie. But it's a values issue that seems aggravated by this concept of ease due to technology. The focus is more on the individual than the whole or family system than ever before. Even traditionally collectivist cultures like China are becoming more individualistic like the US.

I have more to say but am out of my 30 second window and have to get back to Ellie.

I will just say this that that St. Augustine quote made me tear up and think YES that is exactly how I am feeling - angry but that is giving me the courage to say all of this and fight.

Thanks for that one - I may have to dedicate a whole post to it so it's not lost in these comments.
Kathryn

Anonymous said...

Yes! Well said.
Janet

Jacqui said...

ps - love the new header!

Mel said...

My thoughts exactly! Thanks!

Lori said...

Kathryn,

If you haven't come across this website or book before I thought you might be interested in seeing it. It is a lovely effort created by families of children with Trisomy 21. I think you would find some of their messages to have a parallel meaning to yours. I particularly encourage you to view the photo montage. The song and images brought me a flood of joyful tears.

Here's the link:
http://www.giftsds.segullah.org/

Lori

Ryn Tales said...

Lori - thanks for that. You are right about the tears. What a beautiful song and beautiful kids.

Kathryn

Lori said...

Kathryn,

Well, you've inspired me! I have started my own Blog. I decided that I was spending so much time pontificating on other people's blogs, that maybe I should just consolidate some of my thoughts in one place. I consider it mostly a sort of cyberspace journal, but also hope that it might give some people a little glimpse into the dual realities of living with both losses and gains.

I know my thoughts won't necessarily offer you any support in your journey parenting such a special girl like Ellie, but I invite you to take a look anyway.

http://lossesandgains.blogspot.com/

My best,
Lori

Ryn Tales said...

Lori- I was wondering why you did not have a blog. I think it's great that you started one. Always good to get one's thoughts out there. Congratulations on becoming a blogger. I will be checking in regularly. Your thoughts help me a lot.

Kathryn

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