I stayed after church today to hear a presentation about Joseph's House, a home for otherwise homeless terminally ill (mostly cancer and HIV / AIDS) patients in DC. It's a small house, with room for only 6 at a time. This is like a hospice in that it's where dying patients go to live out their last days in dignity. More information is at their website:http://www.josephshouse.org/
Our presenter gave us a moving account of life at Joseph's House. They celebrate each patient as a uniques and loved individual. Many patients have not felt loved in years. Staff and patients have vigils for those closest to death. Every patient dies surrounded by people who know and care for them. Each time someone dies, the staff and residents have a service where they make a card with the person's name on it. Then the card sits on the mantel for a time. Each May, they have a service for all the patients who died in the past year. All the cards are buried in a box, and flowers are planted on the grave. They had 37 cards in last May's box.
You may know that DC's HIV / AIDS incidence rate is among the highest in the world. TheCDC's official definition of an epidemic is: "The occurrence of more cases of disease than expected in a given area or among a specific group of people over a particular period of time." Since some diseases become more prevalent or lethal over time, while others become less severe, the CDC must adjust its statistical models to alter the definition of what's truly more than expected. Currently, HIV / AIDS is epidemic in an area if more than 1% of the population is active. In DC, the reported cases affect 3% of the population--and it's widely believed that as many as half of the cases are not reported.
DC has over 15,000 people living with HIV in a population of under 600,000. Using the population and illness data in the World Clock app at the bottom of this blog, that rate is almost 500 times the global rate.
In addition to attending to the sick in their last days, Joseph's House also calls attention to issues of social justice. Why do we have an HIV / AIDS epidemic in the Nation's capitol?The question is even sharper when one realizes that 90% of the District's cases are found in less than 20% of the District's area. Poor housing conditions and a lack of opportunities lead many people to lose hope. The black community in Southeast DC is disproportionately involved in drug abuse, crime, and the incidence of HIV / AIDS. With 25% of the black men in prison, women outnumber men. This severely reduces their power in relationships. Women, especially those with children to care for, often tolerate abusive behavior from men just to survive from day to day. Many black women with AIDS at Joseph House are rape victims who didn't even bother to take their medicine. Getting medicine is not the issue. They have no home, so there is no way to keep their medicine refrigerated. More to the point, they have no hope for a long term future. Life is a daily struggle to survive.
I applaud Joseph House for alerting these terminally ill patients to the dignity that is theirs as members of the human family. Yet I remain concerned about the conditions of poverty, ignorance, and despair that have filled Southeast DC with so many homeless, terminally ill HIV / AIDS patients. I have the sense that, were AIDS cured today, soon a new pestilence would strike in this disadvantaged group. When I think about the obstacles and challenges in my own life, I can imagine everything working out fine. I have a hard time accepting that many people are convinced they were born to die alone and forgotten on the street.
I have a very hard time accepting that people die alone and forgotten - on the street or elsewhere. It troubles me deeply that those who need help/support the most are those most deserted by our government (state and federal), too - and that the bare-bones programs that are left cannot meet the needs.
ReplyDeleteYet I just read an article in the NY Times about the millions being spent to encourage people to eat MORE CHEESE (not healthy in large amounts!) by an arm of the USDA called Dairy Management - while OTHER US Offices are trying to get people to eat healthier (and spending tens of millions at that, too...)
Why is it that those MOST in need - with the most difficult access to services - are those whose most basic needs are not met? This isn't just a D.C. problem; I see it in Chicago, here in NYC where I am this week, in Detroit. And it's not just in major metro areas, either. It is also not just the disadvantaged, either, who are afflicted: those up a notch or two economically or otherwise also suffer this disease and often cannot obtain the care and support, especially in the terminal stages, they need, deserve, and should have in order to die with dignity.
It's heartbreaking that only 6 individuals can be accommodated at Joseph's House at any one time. Amazing we can give to Ronald McDonald Houses for families dealing with childhood diseases/cancers all over the country, but for HIV/AIDS hospices? Not so much. We could speculate for 100 yrs on why that is - but the bottom line would still remain: HIV/AIDS sufferers may well be convinced they will die alone, unheard and forgotten because THEY SEE IT HAPPEN ALL THE TIME.
(I also have huge issues, aside from AIDS/HIV, about anyone in the USA unable to obtain the medical services, care and attention needed. That's a huge justice issue in my mind, too. That, however, is another issue.)
And since right now, I'm about 500 feet from the UN headquarters...I ask why HIV/AIDS programs are not in place domestically when such programs are being advocated so strongly every day for "the rest of the world". How crazy does that make us here? Sure, we're having economic troubles now - but we are not in Chad's or Uganda's or South Africa's or Sierra Leone's circumstances...
I am sure I sound as frustrated as I feel. I wish I could solve all these challenges, but I can't. And that leads to even more frustration, of course!
The story of Joseph's House is that even the down-and-out who may have lived their entire lives without love or hope, deserve to be treated with dignity, respect, and love in their last moments. More's the pity that so many humans must wait until their deathbed to be welcomed to humanity, and that in our society there is only room for only 6 at a time in Joseph's House.
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