I was there with my employer, Housing and Services, Inc., along with The Supportive Housing Network of New York, who was on hand to help highlight one cut in particular: A $5.1 million cut to HIV/AIDS supportive housing. Family members, advocates, and social service agencies, with their clients and staff, congregated in front of City Hall to tell the mayor to cease the perennial ritual of budget cut considerations afflicted on social services. (I understand that the mayor has a budget to balance; it is unfortunate it can be on the necks of the underserved.)
I was asked by my employer to speak that morning and share my experience as a social worker working in an apartment program and (if I wanted to) share on a personal level. (Well, each level was represented.) I want to share with you that speech; it is a subject that I believe we all need to “keep up front”.... What is happening to the support for people living with hiv? And how will these services and even workplaces continue support people living with the virus?
Here is the manuscript I composed for the press conference. I rather speak extemporaneously, with an outline to maybe guide me, but I wanted to make sure I said all I wanted to in the little time they were giving me. Let me know what your thoughts are:
Thank you City Council members for the opportunity to speak to you this morning. Ladies and gentlemen, friends and future allies, my name is Lora Tucker, a social worker at an organization named Housing and Services Incorporated. I am the clinical supervisor for the organization’s apartment program: Scatter Site Housing 100.
I would like to share with you a brief story:
In August of 1997, after over seventeen years of being an interior designer, I left my job at the Federal Reserve Bank as a senior corporate interior designer. I also decided to take a HIV test after getting a phone call that winter. On August 27th, my doctor told me I had AIDS, on the 28th, I went to my first day on the job at Bedford Hills Correctional Facility, conducting empowerment workshops. As I began my journey, with the only family member I told at the same time; I went to several doctors; one even informed me I probably had six months to live. I am blessed, I did find a doctor and kept the one I had been with; both are my partners in my living, and I made plans to live with the virus, not die of it. And I live with a virus that labels me, marginalizes me and places some scarlet letters on my shirt.
But since I was informed by some doctor that I had six months to live almost 15 years ago, I obtained my credentials as a substance abuse counselor, assisted in the clemency of a mother of four who was a victim of the draconian Rockefeller Drug Laws, Graduated with honors with a masters of social work, receiving Hunter College President’s Achievement Award, received my license in Social Work, published my first book of poetry, I am teaching Diversity, Racism, Power and Privilege at New York University, co-chair a task force for the NASW, and write for two blogs; for POZ and Uptown Flavor online magazines. I am living until I die; I grabbed hiv, my diagnosis, by the... throat and made plans. (By the way, I call H-I-V hiv, because I refuse to give it any more power than it has.) But I am scared. And my fear has nothing to do with my mortality.
I sometimes look at the work I do, the wonderful relationships I have built with my clients, the energy and challenges I have supporting them; maintaining high standards for my agency and myself. I am also aware that being positive, I realize that I won’t be able to continue like this for a long time and maybe not as long as the average person. And as a single adult female with no children and little family, especially in the immediate NYC area, I often wonder what will become of me? Who would care if I became sick in my apartment? A set-back in my health, a loss of my insurance, I could one day have the need for a housing program, and a case manager would be that one advocate, that safety net.
Even with all the effort I have made to live my life fully, with some moments of success, my challenges and barriers aren’t half as daunting as the ones I witness my clients face, and sometimes, overcome. I also witness people who have been quite capable and quite functional one day, overnight become critically ill, and eventually lose everything - having accumulated a little something; their illness wiped them out financially, physically, and even spiritually.
That is why case management at the housing level is so important. As a housing case manager my colleagues and I can see the client more often, respond faster, and have a more focused mission. I can assess, assist, and support my clients, whether they are feeling well and want to connect with a community-based organization or not doing well and need to have someone who can follow through, check on them, and care. As case manager there are times I have been that liaison between my clients and their family (who may not be exactly ready to be caretakers for that individual). Even families whose caretakers are living with HIV appreciate the support because of the challenge of not only dealing with their illness, but raising their families.
The improvements made in medication and HIV treatment may have improved people’s health, but does not completely improve one’s circumstances. It can add to the stress, stigma, and financial burden of surviving; of dealing with co-payments, health insurance coverage, recertification, and compliances that can be difficult to negotiate. Having someone who can help you deal with those barriers, barriers that are challenging even for the healthiest of people living with the virus are necessary.
One client told me that he is a part of an apartment program so he can have a case manager; the security of someone “...checking up on him and acknowledging his existence.”
I believe Gershwin wrote a song about that: “Someone to Watch over Me.”
My client said having support gives him a reason to get up and continue. My clients give me the motivation to get up and fight.