Uconda and *most* of her family (not all!)
Uconda and Family + Tamara and Family (socially distanced visit!)Uconda with her baby on her lap and some of her other family members!
April 23, 2021 – Friday
I have written this for people I know to read, for people who have followed my Lead Poisoning jouney and who are familiar with my film (for people who have some background). If you are new here to this website and there are bits and pieces of the story you are not familiar with, please let me know and I will do my best to fill in the gaps. WARNING: I’m angry – so there’s a fair bit of swearing in this post!
This post is for my good friend Uconda Perry.
IF you have seen my documentary film, you know the first part of Uconda’s story. Uconda and I first met in a phone call over a decade ago. She was one of the many mothers of Lead poisoned children who needed help and couldn’t find local resources so a mutual friend (Jim) told her to call me, to see if I could help her find any assistance after her children were poisoned (this is what I do – all day, every day… help families of Lead poisoned children get answers to questions and find resources whenever possible.)
The story of how Uconda was royally fucked (how her 8 children were repeatedly poisoned in substandard rental housing that had been approved and funded by the public housing system in New York State) is one of the opening stories of my documentary feature film on childhood Lead Poisoning, MisLEAD: America’s Secret Epidemic. Our government (as a rule) does not care when children are Lead poisoned, but it especially does not care when Black children are Lead poisoned. There is also little-to-no recourse for families who have this experience. [You can read more about how the Lead industry actually USED systemic racism to their advantage – as part of their plan to deflect blame for the poisoning of children for more than a century – at this link here.]
Over and over again the public housing program in Rochester, New York approved housing for Uconda’s family (housing falsely certified as safe from Lead hazards), housing that would – at each new address – cause the re-poisoning of her children. She would leave one house that was unsafe and find another house that she was promised was safe. She would move in to the new “safe” house and her children would be re-poisoned. Rinse and repeat. In spite of regulations ostensibly in place to prevent that exact thing from happening – loopholes and corruption in the system made it possible for the same scenario to play out over and over again.
One example of a common cause of this in Rochester (but not necessarily the scenario in all of the houses Uconda lived in): A house would be staged and wiped down (thoroughly cleaned using a wet wipe method) just prior to Lead clearance testing being done and would then pass inspection coordinated by the landlord. The moment after the inspection – the moment the windows in the house were opened or closed – showers of Lead paint chips and dust would be spread around the house (from the friction caused by the mere function of using original Lead-painted windows) making the home no longer safe to live in. Porches (covered in peeling and chipping high-Lead paint) were also normally intentionally not tested as they were not considered play spaces… when in fact Uconda’s youngest (most vulnerable) children would play on the porches all day in the summer (as any child would!) Thanks Rochester! Thanks, New York State. Where were you when this family needed you? And the really sick part is that Uconda’s story (the story of how her children were poisoned) is NOT AT ALL UNIQUE. Not. At. All.
When living in one of these houses in Rochester, Uconda’s toddler daughter (now a teenager – in the peach shirt and mini-skirt on the far right in the photo below) tested positive with a Blood Lead Level of 56 micrograms per deciliter. (Please continue reading below the photo).
In the end Uconda’s family received no compensation or help from “the system” in response to “the system” causing permanent brain damage and significant learning challenges for some of her children. More than a decade ago now, together Uconda and I fought to get her family into a newer construction (Lead-free) home and to get her housing allocation increased so she could afford a space that was an appropriate size for her family (and in a safe neighborhood with good schools) – but even that did not last and the housing we did find for her at that time was (by no standards) an appropriate size for her family.
But I am not writing this post today to talk about how the public health system in New York State royally fucked my friend and her family by directly causing her children to be Lead poisoned (you can learn more about that in my film.) I am here today to write about how the healthcare system (hospitals and doctors) have fucked my friend and her family since then.
But first – our friendship…
Over the past 11+ years I have visited Uconda and her family at every opportunity (not easy given we live 2,712 miles apart!) and our friendship has grown stronger over the years. We have also helped each other whenever we could and we stay in touch on Facebook and with phone calls every now and then. The thing I love about my friendship with Uconda is that even though (at first glance) we have incredibly different life-experiences and perspectives (she’s Christian, I am Jewish – she’s Black, I am not – she has 10 kids, I have four – she’s pro-life, I am pro-choice) we are 100% on the same page about our friendship. We can say ANYTHING to each other at ANYTIME and our shared experience (having Lead poisoned children) is just the beginning of the connectedness we feel for each other.
The kind of person Uconda is…
With some of my Black friends (in response to all that has gone on over the past year since the start of the pandemic) I have personally had concerns about needing say the right thing (about everything going on in the world) – or being criticized for saying the wrong thing. With Uconda the color of our skin does not matter at all and I can talk to her about everything and anything (including BLM and all of the political nuances of the movement and how it has impacted our cities and our families) without any concern for her criticizing or judging me (and she can do the same with me!) Uconda is the embodiment of the definition of being a “good Christian”. Throughout the past five years many memes have been shared on social media that criticize Christians for not being “Christ-like” (given all the hate that is out there in the world and all the horrible things that are done in the name of religion), Uconda is the exact opposite of that – open, giving, forgiving, generous, kind, loving, peaceful… all of these things … and almost to a fault.
But Uconda is Black – so she’s being fucked by the discrimination inherent in the modern American healthcare system.
In September of 2019 Uconda was diagnosed with breast cancer.
• Because she is Black,
• because of financial challenges,
• because she is (now again) a single mother (since her husband of four years left her just before Christmas last year),
• because she doesn’t have a public agency or full-time advocate to fighting with her and on her behalf…
…from the moment she was diagnosed with breast cancer in September of 2019 her life seemed to slip in to a vat of molasses where everything started to move ten times slower than it should have. Instead of getting a quick diagnosis and a quick appropriately aggressive treatment plan (critical given we know the success possible with quick intervention with early diagnosis of breast cancer) it seemed like everything ground to a halt.
As an aside: Lead causes a compromised immune system and cancer takes hold and thrives when one has a compromised immune system. So while we have no evidence that Uconda’s family’s exposure to Lead over many years may have contributed to her cancer – we also cannot fully rule out that consideration. In Europe Lead is classified as a Group 2B carcinogen:
From the above linked website: “The precise mechanisms by which lead causes cancer are unknown. Lead compounds do not appear to cause genetic damage directly, but may do so through several indirect mechanisms, including inhibition of DNA synthesis and repair, oxidative damage, and interaction with DNA-binding proteins and tumor-suppressor proteins.”
Since her diagnosis the system has been letting Uconda (and her family) down
Over the past 19 months I have often checked in with Uconda and she would tell me she was still waiting for her follow up appointment (6 weeks or two months out!) – or they had rescheduled or postponed an appointment or therapy – or they seemed to be discouraging her from seeking second opinions (and there was definitely no option or hope of coverage for exploring any alternate therapies.)
If she was white I expect the doctors would have had this handled quickly and efficiently – and while I cannot speak to her experience (since I am not her and I am not Black), I have seen white friends with a similar diagnosis timeline get treated and having their cancer resolved (and effectively “disappeared”) during this same time frame. It has been incredibly painful for me to watch my friend get tossed aside by the medical system when I am certain more could have been done (could still be done) and could definitely have been done more quickly to help her.
Today – Friday, April 23, 2021
As it stands today, Uconda still has “Stage 3” breast cancer. In the past year and half she had undergone surgery for a partial mastectomy and has done chemotherapy (with recommendations for more rounds of chemotherapy + radiation). She doesn’t feel like the current course of action is saving her life (tonight she told me that her body started rejecting all of the treatments and even her doctor expressed regrets that the treatment was not helping her) and she is determined to live and to continue to be there for her children. She would like to try other paths for healing including an alternative therapy path she simply cannot afford. While the initial tumors that they found were surgically removed, Uconda now has new spots of concern on her lungs and her blood work is still showing signs of cancer.
Complicating things… since December Uconda is again a single mom – now with ten children. She also runs a business and is the primary breadwinner for her family (when her health permits). Luckily here two oldest children (who are now young adults) help out too. The kids right now are 26, 23, 20, 18, 15, 14, 12, 10, 5 and 3 years old and she is also caring for her 11 month old granddaughter.
If I could wave a magic wand I would come up with $300,000 to buy her a 6+ bedroom Lead-free house (completely possible in upstate New York!) so she would have the stability for her family in case she doesn’t survive this battle. Frankly the Federal Department of Housing and Urban Development owes her at least this house – given what they did to her children (via the federally funded programs that left her children Lead poisoned and with permanent disabilities.) I would also find the money to hire a skilled and super-ethical estate planner so the children are taken care of (so they can keep the home in a trust for their benefit) in the event of her passing too young from this horrible cancer she is dealing with. I would find all of that in addition to the funds she is working to raise to see if she can participate in a alternative therapy cancer treatment program.
Can you help me create a miracle for Uconda?
I would consider it a personal favor if you are able to make even a small contribution in support of Uconda’s GoFundMe. The GoFundMe that has been set up (by another friend of Uconda’s) to help here with the alternative cancer treatment she is seeking… and frankly… I would love to see her bring in 5 or 6 times the amount she needs, because then she could also have the stability (and home) for her family – regardless of her cancer outcome. GoFundMe Link.
If you share NO OTHER posts on my blog, please share this one. If you haven’t yet met Uconda, please watch my film as a way to get to know her better. Perhaps we can work together to see if we can get Uconda and her family the help they need during this critical and difficult time. She needs to survive this – for the sake of her children. Thank you.
Note: The funds from the GoFundMe are being sent directly to Uconda and she is keeping the money in a savings account until she has enough to either go ahead with an alternative treatment or help her family in some other significant way (depending on the timing of how things go with her health).
Because I am personally skeptical about the program in Mexico that she would like to participate in (I always try to maintain a level of healthy skepticism about things when I have not done the research myself) I would like to take a moment to invite and welcome any and all suggestions you have that might help Uconda and her family. If you have cancer resources, success stories, links or other information you want to share with Uconda – please comment here on this post on the blog and I will make sure she sees them… we chat via PM often! I do support her choice to do the program in Mexico if she raises the funds and chooses to do that (as it is not my choice to make) – especially given she is otherwise not seeing progress and the hope of what is promised through that program might just be enough to keep her going through otherwise tough times ahead.
At the time of publishing this post the campaign has raised $770 of a $45,000 goal (and this includes a $20 donation from my eldest son!) Please do chip in if you can. Thank you.