I'm so sorry to hear of your tragic loss on The Stew Peters Show. While it is extremely disturbing to realize these hideous things do happen, at the same time it validates my instincts as a mother of a daughter born with Down Syndrome. My daughter is now 32 and your lovely Grace reminds me so much of my own sweet girl. First, I will tell you of an instance that seems minor, but where a red flag popped up for me. My daughter, as was yours I'm certain, is highly generous and always wants to give of what she has, so I was not surprised but alarmed when I learned that she had volunteered to be an organ donor, on her state ID in the event that she was in some accident. My maternal instincts told me that doing so might put her into a compromised situation in the event that there was a tragedy and the wrong people where in charge at the time. There are eugenicists among us. That's not a theory, it's a fact.
Let me say, my daughter no longer lives with me, but I received guardianship of her to ensure the decisions made on her behalf will be for HER safety, happiness and well-being. It's a constant struggle to ensure my guardianship is acknowledged. The companies that are in place to assist her are constantly trying to undermine my legal authority in decision making. She has been living in a small home with a roommate and support staff that comes to their home to help out when they aren't working. The incident I am sharing with you happened last April. My daughter and her roommate contracted Covid and their care helpers, who work for a company, called their company's nurse to take a rapid test. They both tested positive which had the care workers scared to death. At the time, and maybe still now, the protocol was for the ill to stay home unless they got worse to the point of severe breathing problems. While her roommate only suffered very mild symptoms, my daughter had the entire Delta assault of symptoms. I was not in the area when she became ill but as quickly as possible, headed to her to help oversee her care. I didn't think it was prudent to take her out of her quarantined home to stay with me and it was not possible for me to stay with her to care for her personally, so I went to her every day and provided her with what she needed. She was very weak and in much discomfort. It didn't take long for me to be very grateful that I was close by! As I mentioned, the care staff were young and afraid, and their company had them wearing full PPE for every moment they were in the same home. So, everyone was miserable. I could tell that the staff did not want to be there "nursing" anyone, especially with coughing, diarrhea, vomiting, etc. coming from MY daughter (not the roommate). I got a call from her saying she had been awaked because the power had gone out in the neighborhood and as a result, her sleep apnea machine had quit running. I stayed on the phone with her for about 20 minutes trying to soothe her to try to rest anyway, without her machine which she is so used to depending on. I'd just hung up when I received another call, from the house, saying that they had called an ambulance to come take her to a hospital (an hour away) I asked WHY they had not notified me first, they said that's not their company's protocol. She called me last of 4 calls. I also demanded to know WHY on Earth they wanted an ambulance. She said because the pulse oximeter she was wearing registered she was in breathing distress. I told her that my daughter's breathing was ONLY disrupted briefly because of the power being out, the sleep apnea mask was not delivering air to her and that I KNEW that to be the cause, because someone having difficulty breathing can't have a 20 minute phone conversation!!! I hung up on her and sped to her home. She was already loaded onto the gurney, and they were about to load her into the ambulance. I told them to STOP. I told them I have full guardianship and that I don't want her to be taken if it's NOT really necessary. I asked if they had taken her vitals. They said they had and that they were all normal, but the worker, had insisted that she was complaining that she couldn't breathe. In my lack of physical presence, they had the say so. I explained to them, what had happened with her apnea machine, and they agreed that she shouldn't go. They even told me, that the hospital would likely not even admit her since her stats were not elevated! I wanted my daughter to get rest and a hospital is no place to find that. Another reason I was set on her NOT going to a hospital was that my husband had died while in the care of a hospital less than 2 years prior. I saw first-hand, the lack of care he received, and it was appalling. I knew my Down Syndrome girl would get even less. I had to fight a second time to keep them from calling the ambulance for her. I was determined to give her everything she needed to get well and that I had to keep her out of a hospital at all costs! I'm so grateful to God that I could be there to give her medicines and nourishment and liquids that she needed and were NOT being given regularly, even by her "care staff". Two straight weeks of a water bottle with iced water, Pedialyte, Pepto Bismol and Premier Protein drinks got her through the virus. But I just know in my heart of hearts that if she'd been admitted to a hospital on any of those occasions, that she would likely have not made it through. I could not even get her own staff to care for her sufficiently. I can only imagine with horror at the neglect or abuse she would have gotten at a hospital. To answer your question about there being a prejudice against or nonchalance about the life or death of a person with Down Syndrome, my answer is YES, without a doubt, there definitely is. And I'm so Very, Very Sorry for the loss of your Beautiful Grace. God Bless You.
Farmington Hills, MI