The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl-Volume 35: The Advocacy Blog
http://www.youtube.com/watch?v=rvdCLM1aK9U&feature=player_detailpage
Lately I have been helping my partner deal with his aging mother, who fell again last week, breaking several ribs and puncturing a lung. During the process of working with him to find a long term placement for her, I realized two things; that life keeps throwing us curve balls and that I am really good at hitting those. By this I mean I seem to be good at dealing with crisis and at being an advocate who gets things done. So lately I have thought about doing just that, becoming an advocate for the disabled and elderly. I have been wondering about my next steps and these could be it, and that is the focus of the blog. But first…………….
My WTF of the week is the insanity of the Build a Baer Workshop. For five and a half years I have managed to avoid the place and convince my child there was no such thing. And by the way thanks to the six year old who recently told my daughter that there was not only a Disney World, but a Disneyland. I had kept that one under wraps and am still pretending I had no idea these places existed. So, somehow my child learns about the Build a Bear and makes a request to go there for her half birthday. Thanks to my sister for instituting the half birthday concept, which even includes gifts. So on the fourth of July we end up at the madness that is the Build a Bear, whose sole purpose is to make you part with as much money as is possible because your child insists on dressing and accessorizing a stuffed animal. What I did not realize is that there are more than bears there-there are lots of animals from which to choose. I was fond of one that for some reason smelled like chocolate, but Sadie picked a pretty cool white cat that had some glitter and hot pink accents. After they stuff the animal, with your child's help because they push a foot pedal, they go through an elaborate ritual of having your child put a heart in the animal and then kiss it and make a wish. Then it’s off to give the animal, which of course has taken on human qualities, a bath which consists of things that look like faucets but are relay just blowers to get the extra fuzz off. Before you give it a name and make the birth certificate, which makes it a real live person, they have tons, and I mean tons, of outfits and accessories for the animal. At first Sadie picked out some Hawaiian costume with a lei. I was curious as to why a cat needed a lay. I told Sadie all the cat needs is a litter box and some food and I was not sure why it needed the clothes, shoes headband and sunglasses. She insisted the cat needed an outfit, so I have to admit I did get a little carried away when she picked out a super glittery sequined top, because the blind girl loves shiny things, so of course I had to find the perfect bottoms and them we decided she was a rock star so we needed a microphone and cool glasses. At this point I was sucked in, making several wardrobe and accessory choices. But I stopped short of her needing a hot pink glittery purse because what does a cat carry that makes a purse necessary. Sadie named her Lovina and we punched in the info for the certificate which probably also means we will get tons of solicitations and they will track us till the ends of the earth. The total cost for said Lovina was $42. I think I actually gasped because I could have gotten us matching mother and daughter dresses at Target for that. And at the point you are at the register you can’t really defrock or de-accessorize without causing trauma to your child. I vow to never return there. But admittedly Lovina is a very cool and well-dressed cat.
This week I can’t get enough of the TLC series My Big Fat Gypsy Wedding. It is oddly mesmerizing. The gypsies love hot pink on their nails and in their dresses and even as a color for their cars. The amazing thing is the wedding and first communion dresses. They are like 10 feet wide and one even had lights on it and butterflies. And the gypsies love glitter and they spray tan their children. One interesting thing is that the Irish Travelers (gypsies) live in trailers because big duh, they travel. But they don’t have bathrooms in the trailers because that is unsanitary and they use the bathroom outside. Still trying to figure that one out. Of course there are serious matters that gypsies face like discrimination and the UK government bulldozing their settlements, but let’s get back to the dresses and the large caravans and raucous partying after the ceremony. I wish I could have seen the pageantry a little better, but I had my daughter providing commentary on all the fabulous fashions and she has decided her own wedding dress should be hot pick with blue lights and butterflies. How cool is that. She also felt there was no problem with the younger sisters wearing matching wedding gowns or the fact the travellers get married at the ripe old age of 16. Great!
It seems as though I have been helping people solve issues with the health care system lately and I seem to be good at it. After my accident and having to navigate the system I thought about becoming an advocate for the blind, but did not pursue it. Now I am in the position of helping to advocate again while at the same time my coaching clients are despairing. I also have been consulting on health care initiatives. So, as usual I am trying to figure out what all of this means for what I am supposed to be doing in my career. And I have come to realize that I should begin focusing on being a health care coach and advocate for those with medical issues and disabilities. And that is what I am going to do. I see my job as helping families set short and long term goals, work through problems, research interventions, resources and programs available and go to battle with them dealing with the government, hospitals, social workers, health care systems or whatever system they are trying to navigate. I am good at fighting battles and I have found that I bring objectivity, compassion, empathy and experience to the issues families are facing. Right now my goal is to do this for as low of a cost as I can bear, which is probably about 50 an hour. But I am pretty efficient, so in 5 hours I could possibly accomplish what it would take some families weeks or months to get done. Eventually, maybe if I wrote my book and make some money, I would like to offer my services for free. This is my way of giving back and of sharing all I have learned about navigating systems as a consultant, as a patient and as a person with a disability.
I have also realized that when you get to a place where you feel happy and content life keeps happening and bad things happen, even in the midst of all the good. That is what makes up life, the blend of small miracles and huge surprises and tragedies. I am not sure than life would be interesting without this mix. My experiences have made me a strong person who can stay centered and somewhat calm and level headed through the surprises and tragedies and for that I am so grateful. So my calling may be to share this strength with others. I am in the early stages of figuring it all out. But I am sure whatever I decide to do I will do it wholeheartedly and with integrity.
Keep Moving Forward,
Beth (BLOVI) Medlock
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