I am in Vermont and skiing. I have skied three times. Day one was great. Day two a bust. Day three awesome. This is the very last aspect of my life to be reclaimed since my wound healed. I am not happy, I am thrilled. I am also in bad shape. My conditioning is not good. I cannot ski all day yet. I made five runs today. I got better each time. My speed increased, I was linking turns well and gained a huge amount of confidence. Will ski tomorrow morning and head home. I am also teaching at Purchase College. I truly enjoy teaching there. The students are smart and appreciate the value of an education. I am adjusting to the evening class that ends at 9:50pm. And yes I hold them to 9:50pm or darn close.
Been thinking of a new post while I am driving to and from Vermont. I think well when driving. For some time I have been feeling divorced from newly paralyzed people. They don't seem to get it. It meaninig equality. Some newly paralyzed people think they are unique unto themselves. Zero thought is given to where ramps and elevators came from or that there was and is a civil rights battle to be waged. I get this, it takes time to get up to speed and learn how to adapt to a paralyzed body and the social implications of wheelchair use. What I do not get is the unique sentiment. I refer to this as the Reeve school of paralysis. There is an unwillingness to accept paralysis and move on with life. Part of this is the fact the cure industry has its hooks into the rehabilitatioin n business. Not sure where blame lies but I perceive newly minted paralyzed people as set up to fail. There is far too much hand holding. I do not advocate stepping back in time where the mentality was sink or swim. Too many sank and were never heard from again. What strikes me is that we paralyzed people are not unique. We share common social, economic, and political barriers. Yes, no two people are paralyzed the same way. But paralysis is the least of problems. We old timers get this, especially those active in the struggle forequal rights. And here is where being unique hurts us. We are divided and easily oppressed. We must be united politically. We must be hard assessing. We must assert ourselves and advocate for all people with disabilities. This philosophy is the antithesis of the most wellknown paralyzed person in recent memory, Christopher Reeve. More on this in my next post.
Working slate in North Wales....
Monday, February 6, 2012
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| XS775.41 Porthamdoc, [Portmadoc] nd. Gwynedd Archives |
The collections include records of various quarries (Castell Slate Quarry, Dinorwic Quarry, Dorothea Quarry etc), the North Wales Quarrying Museum Collection, papers relating to the Union of North Wales Quarrymen and material relating to the Ffestiniog Railway line which was constructed in the 1830s to transport slate from Blaenau Ffestiniog to Porthmadog.
They also hold the records of two companies which were catalogued as part of the Powering the World project.
� Davies Brothers, Slate Merchants, of Porthmadog, established in 1879. The company ordered slate from many quarries including Diphwys Quarry and Wrysgan Quarry, Merionethshire, and Bugail Quarry, Caernarfonshire. The company supplied slates for rails, tram roods and roofing.
� Inigo Jones, Slate works, Caernarfon, established in 1861. The company originally produced writing slate for schools, later also producing electrical slate panels for Cunard ships, fireplaces, memorials, and, more recently, slate for domestic or decorative purposes. The company recently celebrated it�s 150th anniversary.
Here are a few slate industry images from their fantastic photographic collection:  |
| XS1058/2 Llechwedd Slate mine: View of schooner being loaded with slates at Greaves� Wharf, Portmadoc [Porthmadog], nd. Gwynedd Archives |
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| XS1058/39 Llechwedd Quarries. Slate dressing mill, nd. Gwynedd Archives |
No Celebrating Here
Wednesday, February 1, 2012
On January 13 a post entitled Brick Walls at Wolfhirschhorn.org caused a media frenzy. I wrote about this as did many others devoted to disability rights. The story puzzled me from its inception. Organ transplants are rationed and people die waiting for organs. I knew that disability bias exists when deciding who does and does not get a transplant. I accept this as a given. I assume if I ever needed a transplant I would be denied based on the mere fact I am paralyzed. Yet people seemed shocked when a CHOP denied a cognitively disabled child an kidney. The denial was based on her quality of life and cognitive ability. In my estimation, the only thing that was different about the Rivera case was how blunt the doctors were with the parents. The subsequent uproar and firestorm across disability related blogs is a sign of just how fast news can travel. Thus the Rivera case differs in one key way from Sandra Jensen circa 1995. A supposed resolution with the hospital has quickly been reached.
My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:
"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can�t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story�they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".
No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.
My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:
"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can�t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story�they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".
No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.
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