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editor
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Joined: 31 Oct 2003
Posts: 297
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 Posted: Fri Nov 14, 2003 2:14 pm Post subject: Advocates |
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Advocates:
Jean Vanier
Becoming Human
Paperback
By Jean Vanier (Order of Canada AND French Legion of Honor)
Order the five-CD Audio set from CBC Shop.
| Quote: | | As I think back on my life, hidden in the secret recesses of my heart-memory, I discover or, perhaps, feel those who accepted and loved me just as I was. They did not judge me; there was unconditional love. One of those people who freed me to be more fully who I was and am was Father Thomas Philippe. I met him shortly after I had resigned from the navy in 1950. I lived with him and other seekers of truth and a meaningful life, in a small community he had founded just outside Paris. After years of separation, we met again in 1963, when he was the chaplain of an institution for men with intellectual disabilities. It was he who introduced me to people with intellectual disabilities and who helped me to see their value and importance in the world, for they are people of the heart. He encouraged me to begin l'Arche and he lived with us in the community almost to the time of his death. (Excerpt from Becoming Human, CBC Massey Lectures Series, published by Anansi in Toronto, 1998). |
What wonder and mystery drove this handsome and charming former naval officer and philosophy instructor, the son of one of Canada's most beloved governor generals, to found the now famous L'Arche communities that are home to mentally handicapped residents in 123 locations throughout the world?
For more information about these fabulous places, contact the L'Arche Canada Office. Here are listings for B.C.'s two L'Arche communities:
| Quote: | | Here, too, are a few sunny summer photos and more photos of members from the Greater Vancouver L'Arche community. |
Our e-mail to L'Arche:
| Quote: | From: <editor>
To: <woodprod>
Cc: <editor>
Sent: Monday, November 24, 2003 4:56 PM
Subject: L'Arche Wood Products
Hello L'Arche,
We're a new disability consumer/advocacy website at http://www.bcdisabilities.com here in Vancouver, and we were so very happy to find your site lately. We had no idea there was L'Arche outside France. We've already included your founder, Jean Vanier, at our Disability Heroes forum. Could you tell us about the wood products you make and, if they are for sale, how they might be purchased? Do you ever have open house at L'Arche? We'd love to hear from you.
Editor@bcdisabilities.com |
And L'Arche's friendly invitation:
| Quote: | From: "L'Arche Wood Products" <lwp>
To: <editor>
Sent: Wednesday, November 26, 2003 2:26 PM
Subject: L'Arche Wood Products
Hello Editor:
L'Arche has been in Burnaby for the last 29+ years. We're glad you found us.
At L'Arche Wood Products, we manufacture component pine shelving. We are happy to sell to the public, and we are open to giving tours of our workshop also, but please call ahead to make an appointment at 604-540 322.
Regards,
Lorne MacDonald
Workshop Manager |
... but B.C. 'BILLIES want to shut internationally-acclaimed L'Arche down!
| Quote: | CBC Go Public
Group of adults with disabilities may lose their B.C. home
L'Arche home says it can't keep going without more provincial money
March 4/08
| Quote: | A group of developmentally disabled adults may lose the only stable home they've ever known, and the group that runs the Burnaby, B.C. facility says the Campbell government is to blame. "There's something going on in this province that people need to be aware of and it concerns all of us, as taxpayers and citizens," said Trudi Shaw, board president of L'Arche Greater Vancouver. "This government seems to be overlooking some of its most vulnerable and marginalized citizens."
L'Arche, an internationally recognized organization, is unique because it not only houses developmentally disabled adults, but strives to give them meaningful roles in the community. Its woodworking shop in Burnaby was one example — a thriving workplace for the disabled that L'Arche recently had to shut down, partially due to its budget problems. "Without exception everybody [who lives there] has said they want to stay in a L'Arche community — and we have been told that is not possible," Shaw said.
Barry Thomson, one of two dozen people who live in the faith-based Burnaby residential care facility, has severe autism, and has been there for 24 years. For people like him, it's highly unusual to find such long-term stability in one home. His brother Gordon says he has no idea how his family would cope if that suddenly changed. "Oh, disaster," Gordon replied when asked what would happen if Barry had to move. "It would be an absolute disaster — unless there were some other place like L'Arche and I don't think there is."
L'Arche is a normally a media-shy organization, but the group decided to "go public" about its funding crisis because they feel they've exhausted all of their options.
L'Arche has gone without any budget increases for eight years, Shaw said, while its overhead, including salaries, has climbed. The group needs about a $1.5 million boost to their $2 million provincial allocation to make up for an historic shortfall. Without that funding, Shaw said, residents might be forced to move into adult foster care, where they move around frequently and sometimes don't get the love and support they need.
"We look at what is happening in the foster care system and we are really frightened," Shaw said. "I'm afraid that they will cease to have a sense of their own value and dignity. We're talking about people being isolated; we're talking about people ceasing to have a sense of value and purpose in their life."
A statement by Community Living B.C., the Crown corporation that provides L'Arche with provincial funding, read in part: "Our first commitment is to those individuals with developmental disabilities and the families that L'Arche serves. CLBC supports the model of service delivery that L'Arche has been providing for the past 25 years … L'Arche has asked for a 75 per cent increase to their contract to provide service differently to the same number of individuals. CLBC does not support that request." CLBC CEO Rick Mowles was not available for an interview.
Thomson said he doesn't understand why the Crown corporation would shortchange a place such as L'Arche to save money. He figures L'Arche saves millions of tax dollars in the long run by keeping its residents out of already overcrowded hospital emergency rooms.
Laney Bryenton, of the B.C. Association for Community Living, says hundreds of organizations are starved for funding while hundreds of disadvantaged people remain on waiting lists.
"Barry had to go into the hospital about a month ago and the staff went down with him and stayed with him in the hospital," Thomson said of his autistic brother. "You wouldn't see staff from any other home doing that." If Barry and the others had to move, Shaw said, they would not only lose their home, they would lose their second family. "They've lived in this environment where they have been loved and where their gifts have been recognized and drawn out for years and years and years," Shaw said.
"[L'Arche] is very representative of organizations that have not had increases in their contracts," said Laney Bryenton, executive director of the B.C. Association for Community Living, an advocate for thousands of developmentally disabled people in B.C. Each year, Bryenton said, the Campbell government fails to give CLBC the money it needs, so the Crown corporation has no choice but to shortchange hundreds of organizations such as L'Arche. In the latest budget for 2008-09, Bryenton said, the government gave CLBC $22.3 million for new services, when its service plan said it needed at least $35.5 million to shorten its waiting list. Approximately 700 developmentally disabled adults are on currently on that waiting lists in B.C., unable to get various types of assistance, Bryenton said. "We've got a lot of stories of families who have their 19-, 20-, 21-year-old [disabled child] simply sitting at home," Bryenton said. "We have stories of families who have had to quit work in order to look after their 19-year-old because when their child transitioned out of school, there was nothing for them." When she hears Premier Gordon Campbell promise to make B.C. 'the best place on earth' for disadvantaged people, Bryenton said, she wants to see the proof: "We want them to make a substantive investment in those services. We want them to make good on that promise."
Tom Christensen, the minister responsible for funding CLBC, told CBC News the Crown corporation received a 6.5 per cent budget increase this year, and what it does with the money is not his decision. "I have confidence that CLBC will work with different service providers to look at some of the challenges they face and insure that both the service provider and CLBC are focused on what they both should be focused on — and that is serving the clients that need their assistance," Christensen said. He refused to comment on the future of the L'Arche residential care home. |
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Our e-mail to Minister Christensen:
| Quote: | From: editor
To: http://www.tomchristensenmla.bc.ca/?section_id=1400
Sent: Thursday, May 22, 2008 10:43 AM
Subject: L'Arche
Minister Christensen,
It's too bad L'Arche is not a developer flogging still more leaky, unaffordable, inaccessible, barrier-full condos in B.C.'s new failed housing economy or their community, too, might enjoy the protection of your colleagues in govt. No, unfortunately for Jean Vanier's internationally-acclaimed models of human achievement, L'Arche cannot claim an even remotely similar history of spectacular, unprecented and unrelieved failure.
Happily, however, L'Arche is not without influential friends, who will be pleased to take any local closures to the international arena, where we'll show the world the backwater B.C. 'BILLIES who are charged with the care of this pristine province.
Passing regards,
Ed. |
And to L'Arche:
| Quote: | From: editor
To: office@larchevancouver.org
Cc: editor
Sent: Thursday, May 22, 2008 10:57 AM
Subject: We've joined the fight!
Hello dearest L'Arche, Model of Human Achievement,
Just a quick note to let you know we've joined the CBC Go Public fight for proper funding for your excellent communities. See http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=41#41, including our e-mail to Minister Christensen, which we will post at a variety of international sites to attract attention. Please let us know if/when proper funding has been restored.
Your brother in arms (only those for hugging),
Editor@bcdisabilities.com
Tracking all aspects of disability worldwide, especially the devastating consequences
of wrongheaded decisions made by those we now refer to as B.C. 'BILLIES. |
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=41#41
Last edited by editor on Thu May 22, 2008 11:00 am; edited 16 times in total |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Mon Dec 01, 2003 12:26 pm Post subject: |
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Local Heroes - the B.C. Coalition for People with Disabilities (BCCPD):
Jumping Through Hoops
B.C. Human Rights Commission Publication
By Transition magazine editor Ann Vrlak and BCCPD advocate Jane Dyson
2000
| Quote: | | Narratives of advocates with disabilities beginning at p. 21. This report is a must read for any government considering changes to disability legislation. We'll try to find out how the advocates are doing today. Please check back for updates. |
More on the evolution of the universal medical certification initiative described in Hoops in this April, 2002 excerpt from A Voice of Our Own, a publication of the Council of Canadians with Disabilities (CCD):
| Quote: | CCD Member Group Updates
British Columbia Coaliton of People with Disabilities (BCCPD)
The BCCPD has prepared a brief for the Romanow Commission review of heath care. We are also making a presentation to the Commission in Vancouver this month. We are recommending: a National Home Care Act; a national fund for disability supports; and a National Pharmacare Plan as key elements for providing all Canadians with better quality, cost-effective health care. These measures are not only beneficial from a cost/benefit point of view, they are essential for cementing the link between citizenship and health care. By incorporating Home Care, Disability Supports and Pharmacare into the health care system, the federal government would ensure access to appropriate levels of necessary care, promote health and independence, and reduce costs in the long term. For meeting the challenge of providing the level of health care Canadians expect while ensuring sustainability, it is hard to imagine a better fit. With a renewed federal commitment and an emphasis on cost-effective, preventive measures, we can develop and sustain a health care system without imposing user fees and privatization. Indeed, we can review a system that both makes us proud to be citizens, and promotes the right to citizenship for all Canadians. |
From BCCPD's legendary Advocacy Access Team:
Robin Loxton
| Quote: | | Loxton is the 2003 winner of the Council of Canadians with Disabilities national award for advocacy on behalf of people with disabilities. <a href=http://www.bccpd.bc.ca/mediars.html#robin">View the August, 2003 media release. Loxton is now co-director of the coalition's Advocacy Access program, an information and representation service for appellants at administrative tribunals. For more information about the program, click on Loxton's excellent article, Advocacy That Works, from EnableLink here. Loxton is also a previous winner of the Diane McFarlane Award for outstanding advocacy in the field of mental health. Scroll to the bottom of this April, 2002 PovNet page to read about it. |
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=102#102
Last edited by editor on Thu Mar 19, 2009 7:30 pm; edited 18 times in total |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Fri Oct 22, 2004 10:39 am Post subject: |
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Reflections from a Different Journey
What Adults with Disabilities Wish All Parents Knew
Hardcover
Edited by clinical psychologist and educator Stanley Klein and attorney John Kemp
| Quote: | | For this book, adults with different kinds of disabilities and/or special health care needs have written short essays for parents - as well as for older children with disabilities, family members, and the education and health care professionals who serve them. In the invitation to prepare these essays, the authors were asked to write about something that they wish their own parents had read or been told while they were growing up. We hope that the range of personal perspectives provides not only emotional support and inspriation but also practical child-rearing information. In addition, we are confident that these essays will instill a stronger sense that adults with disabilities can and do make vital contributions and are tremendous role modesl as well as advisors to familieis and professionals. (From the Introduction) |
On the need for representation for and by people with disabilities:
| Quote: | Many misconceptions occur when a person has a disability. I saw my siblings spring to my defense time after time. When a young child heard my "deaf" voice and ran away in terror, my family let me know that the problem was ignorance - it was not something I had done. ...
In my junior year, the Gallaudet Board of Trustees conducted a nationwide search for a president. The pool of candidates was narrowed down to three qualified finalists, two of whom had a hearing impairment. Letters, telegraphs and newspaper articles called for the appointment of a president with a hearing impairment. To the surprise and shock of many, someone with no hearing loss, or knowledge of the needs ofindividuals with a hearing loss, was selected. I was very much involved in the activities leading up to the election of Gallaudet's president and was on the front line of the Deaf President Now protest in 1988.
Much has been written about the student-led protest that resulted in the appointment of Gallaudet's first deaf president, Dr. I. King Jordan. This movement attracted the attention of politicians on both sides of the aisle, persons in television and film, and national disability groups as well as the media all over the world. Upon his selection, Dr. Jordan declared, "Deaf people can do anything but hear." (From the chapter by Christina Pean, who is profoundly deaf and blind in one eye as a result of spinal meningitis at age three, pgs. 52-53). |
On a culture peculiar to people with disabilities:
| Quote: | People with disabilities have a culture of their own - just as African American, Hispanic Americans, wormen, and so on do. The notion that a culture of disability exists is anathema to some people; yet, it is fully understood by most adults who have lived with their disabilities for years. Typically, cultural phenomena are transmitted down through families, as lore and legend, and at places of worship. Our disability culture is transmitted from one of us to another, peer to peer. Yet, parents and families can nurture it. When my father gave me my pride in being a person with a disability, he was nurturing a culture of disability within me. I urge parents and families to nurture our culture.
Carol Gill, Ph.D., an assistant professor in the Department of Disability and Human Development, College of Applied Health Sciences at the University of Illinois at Chicago, has articulated the core characteristics of our disability culture as follows:
. People with disabilities have a heightened acceptance of human differences -- whether social, racial, economic, or class.
. People with disabilities consider interdependence an essential aspect of our lives.
. People with disabilities use humor -- the ability to find something absurdly hilarious in almost anything, however dire -- without it becoming self-deprecatory.
. People with disabilities have an ability, acquired over time living with our disabilities, to read others' attitudes and conflicts in order to sort out, fill in the gaps, and grasp the latent meaning in contradictory social messages.
We are connected as a culture because of shared indignities inflicted upon us by poor architectural planning and design and by others' stereotypically negative assumptions about us. We are also connected by the frustration and anger that wells up once in a while when we tire of dealing with prostheses, scooters, and sores - and that makes us search for understanding by someone who has been where we find ourselves. Anger, frustration, and hurt are managed quite well by many of us..and poorly by all of us once in a while. But how do we handle these emotions? (From Afterward: Disability Culture, pgs. 197-198) |
Any thoughts? Send questions, comments to editor@bcdisabilites.com. Let us know if you have contacted any of the book's contributors and/or contacts listed helpfully at the book's conclusion. Please check back soon for updates.
Our e-mail to John Kemp:
| Quote: | From: editor@bcdisabilities.com
To: john.kemp@ppsv.com
Cc: editor@bcdisabilities.com
Sent: Friday, October 22, 2004 5:00 PM
Subject: Disability culture and worldwide legislation
Hello John Kemp,
We try each Friday to end the day with a cheerful 'cups up' and this week it's cups up to you and your colleague Stanley Klein for your excellent book, Reflections from a Different Journey. We read it like a tonic and laughed and wept, too, in a few places. View our posts about it here. We especially like the contact information at the end of each piece and at the end of the book. It is indeed tiresome to go through the excessive listings at most disability websites.
What we're trying to do here is to create a searchable legal database addressing issues common to people with disabilities worldwide in an effort to shift the burden of proof at least a little from their weary shoulders. Of course, we have no resources and no time for outreach except like this. Any ideas as to how we might use our time and legal research efforts most wisely? So far, we take it pretty much one e-mail query at a time.
We'd love to hear from you and so would our visitors, many of whom are from jurisdictions outside of British Columbia and Canada. Any wisdom would be greatly appreciated.
Thanks,
Editor@bcdisabilities.com
http://www.bcdisabilities.com
Tracking all aspects of disability worldwide. |
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=257#257
Last edited by editor on Thu Mar 19, 2009 6:19 pm; edited 15 times in total |
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editor
Site Admin
Joined: 31 Oct 2003
Posts: 297
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| Posted: Fri Apr 07, 2006 6:19 pm Post subject: |
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Singing My Him Song
Hardcover
By Malachy McCourt
| Quote: | When Diana and myself searched for the residential facilities for Nina, it was with the expectation that we would find a permanent, loving home for her. A place with the trained people in the facilities to help her acquire ordinary life skills such as feeding and dressing herself. ...
Our next stop was Willowbrook State School for the Retarded on Staten Island, another institution in a bucolic setting. From their very comfortable and spacious houses atop small hills, the director and his senior staff had splendid views of lovely sweeping greenswards on several hundred acres of wooded lands.
They told us there was a two-year waiting list, but if we consented to admit Nina through the hepatitis program, she could be placed immediately. As it was explained to us, they were testing a new vaccine, and it was nearly totally effective, except for a few small glitches. They also told us that as 100 per cent of the residents got hepatitis, it would be advisable to get this vaccine anyway. What they didn't tell us was that the program was totally experimental, and that the residents at Willowbrook were the guinea pigs. Nor did they mention that the U.S. Army was funding the program.
Yes, parents and relatives did give consent, but as the ramifications of hepatitis and the hepatitis program were not explained fully - indeed, obfuscation was the order of the day - it was not "informed" consent. Of course, nobody would believe that the noble and honorable United States government would ever use innocents in a disease-inducing project. When I asked, much later, why monkeys were not used in the experiments, I was told that monkeys were very expensive. ...
Diana and myself were invited to join the Benevolent Society for Retarded Children, Willowbrook Division, a subgroup of the National Association for the Help of Retarded Children. Both of these groups were moribund and resistant to change. Their main function seemed to be having annual lunches and dinners to honor the self-satisfied directors and commissioners of the various institutions that were quietly and systematically destroying the residents of their hell-holes.
But we looked around carefully, and slowly the full savagery and horror of Willowbrook State School began to emerge. We were surreptitiously contacted by some folk who were working at this awful place, and they put us in contact with other parents who had not been brutalized by imposed guilt or fear of retaliation against their kids. Dr. Mike Wilkins and Elizabeth Lee, a social worker, began talking to the press, though forbidden to do so by the director, Dr. Jack Hammond, a dour sourpuss of a man.
Also leading the charge was Dr. Bill Bronston, a dynamic, intense man, so suffused with passion and compassion that there were days he was so emotionally charged he could hardly speak. Bronston was tenured and could not be dismissed except for cause, but Mike Wilkins and Elizabeth Lee were in a precarious position, as they were not tenured employees and were in danger of losing their jobs.
Ira Fisher, another social worker, took us on a tour of the back wards. When he opened the thick, heavy doors, I was assaulted by smells and sights and sounds that were so awful I didn't want to believe what was in front of me. A look at Diana told me she was stunned by the desperate savagery of this pitiliess place, littered with twisted and grotesque bodies, writhing and rocking on floors gleaming with the slime of every excretion a human body can produce. Strange, high-pitched howls and low groans rent the air interspersed with dervish-like leaping and jibbering beings. The hard, spare floors and walls reverberated with a deafening, dissonant symphony. Not only were some of the residents retarded, they were driven totally mad by the conditions of their so-called state school.
These "recreational" areas held as many as 80 residents, with perhaps three attendants to administer to their needs. High in the corners of these dank dungeons, there flickered the everpresent television, showing soap operas with sleek men agonizing over imaginary lost millions and perfect females weeping over imaginary lost loves. Amidst these insane horrors, with soap operas playing out above their heads, the attendants, no less battered by the conditions than their charges, tried to shuttle and cajole the residents to the lavatory, or to lunch or to dinner, which would last all of five minutes.
... Among the co-conspirators was one of the bravest people I've ever met, one Bernard Carabello, a 20-year-old man who had been a resident of Willowbrook for 16 years. Bernard was diagnosed as mentally retarded, and it was forcefully suggested to his mother that she institutionalize him, which she did, when he was four.
As he was considered retarded, the officials spoke openly in front of him, and he fed us information about what was going on inside the facilities. If it had been known he was funneling this intelligence to us, he would have been beaten and put into one of the isolation cells, or they might have designated him a 'biter,' and, as was done with those so designated, pulled all his teeth. Without the benefit of anesthetic.
Bernard would later go on to become a prominent activist in all areas connected with the handicapped. He earns a good salary and travels extensively hither and yon, giving talks and consulting wherever he is needed. (-- pgs. 127-139) |
About the Willowbrook court decisions:
| Quote: | From: "Library Archives" <archives>
To: "editor" <editor>
Sent: Monday, April 10, 2006 7:03 AM
Subject: Re: Malachy McCourt and Willowbrook
Dear L.M. Murray,
As far as I know, the consent judgments are not available online. In some cases, they are unavailable even on Lexis-Nexis. We have print copies of anything that we've listed in our guide, and they are available through some other libraries.
Catherine Carson, Assistant Archivist
Archives & Special Collections
College of Staten Island Library |
Becoming pally with legendary disability advocates, Diana and Malachy McCourt:
| Quote: | From: FAMILY804@aol.com
To: Editor@bcdisabilities.com
Sent: Wednesday, September 06, 2006 7:12 AM
Subject: Malachy McCourt's 75th Birthday and Fundraiser
Attached please find your invitation to my 75th Birthday Party and Fundraiser. Pulitzer prize winning author Frank McCourt will be opening the show. Music will be provided by David Amran and Mary Courtney. This should be a great evening. Please invite a friend.
If you cannot open the attached invitation, please visit www.symphonyspace.com and look for the September 20th listing of this event.
Malachy McCourt |
Alas, we must decline:
| Quote: | From: editor
To: FAMILY804@aol.com
Sent: Wednesday, September 06, 2006 3:39 PM
Subject: Re: Malachy McCourt's 75th Birthday and Fundraiser
Oh, you mad Irishman! Governor indeed.
I cannot think of anything I'd rather do than kick up my heels with the beloved McCourts of New York at Symphony Space, venue of some of the most memorable literary readings ever recorded. I know this because I have a bunch, which cost a bundle, and they will not let you purchase just one tape even when some villainous wag in a hospital pinches Jerry Stiller (the real one) reading The Anarchists' Convention, but never mind that.
I love all the brothers' books and have purchased all in their various forms, which also cost a bundle. Hied it once in a downpour over to the Chan Centre to hear Frank read from T'is a few years back. (Remember the Irish Times headline? T'isn't! What bounders!)
Unfortunately, I will have to deprive you of my charming company as crossing that border now with the Busher's banditos at the ready scares the bejabbers out of me. I will, however, mark the date on my calendar and play a Pogues CD over a pint in your honor. Quaere whether a pay per view podcast might not allow greater participation. Consider it.
In the meantime, Malachy and Diana continue to enjoy plenty of traffic at my Disability Heroes forum, where I have shamelessly scalped a large portion of of the book describing your good work on behalf of Willowbrook's foresaken inmates:
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=285&sid=0d927b60c437dc06bf225c2fa65b25d2#285 . Those of us who are today bringing forward new cases of similar institutional abuse owe you a debt of gratitude, so thanks a tonne!
And a very, very happy 75th! Congratulations! If you guys are ever in Vancouver on the Left Coast of Canada, please look us up and we'll dine you like kings.
With much love and admiration,
L.M. Murray
Editor@bcdisabilities.com
http://www.bcdisabilities.com
Tracking disability justice initiatives worldwide. |
Symphony Space
(Selected Shorts A Celebration of the Short Story, Vol. I)
Featuring Jerry Stiller reading The Anarchists' Convention by John Sayles
Audio Cassette
Link to this entry
http://www.bcdisabilities.com/bcdisforum/viewtopic.php?p=285#285 |
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