He Ain't Heavy, He's My Brother (song title credit to The Hollies).
Since the onset of the novel corona virus, it became necessary to put NYS on "pause". Since 3/15, I had not been able to visit with my brothers in the group home or for them to visit me in my home. It was a necessary evil. Things were out of control here in NYS. NYC became the epicenter of the virus and for their protection and mine, we couldn't be together. We certainly didn't want to take the chance of getting each other sick. I fully supported it. I was very concerned about John but especially Billy. I was extremely worried that either of them would contract this virus, and if they did, deep down I knew it could really be bad. Both of them have many medical conditions, but Billy especially. He would never be able to tell us he wasn't feeling well so by the time it would be "discovered", my worry was too much time would have passed and he could or would get seriously ill. I agreed with the restrictions. I knew we had to stay apart to stay healthy. However, when we began to slowly open in phases here in NYS, it became obvious that group home individuals were being forgotten in the plans for the reopening. I give a ton of credit to the group on Facebook called NYADD (New York Alliance for Developmental Disabilities). This group was started by parents and grew to over 4000 members in a very short time. We linked arms and fought like crazy to get NY assembly members, senators and our governor to listen and demand answers. Rallies were organized. The news stations across NYS began to provide coverage to bring awareness to the fact that even though much of the region was in Phase 4, our family members were still locked up. You could get a haircut, get a tattoo, or even outside patio dine, but we couldn't see our family members. It was beyond frustrating and unfair. Finally, in late June, Governor Cuomo announced that we could visit family members inside their group homes. This came with many new guidelines and restrictions. The visits had to be outside, for one hour, between certain hours and with masks (*I don't mind the masks, I think they work....just my opinion!). So, we won a small victory but not the war. It was still not enough. We were even fighting against the language being used. We are not "visitors", we were family members!
Finally, on July 15, 2020 we were permitted to bring our family members home for home visitation and community outings were allowed to resume. I picked John up that day at 9 am and we went to Billy's house later that afternoon to celebrate his birthday! I was happy, but also weary. Why does everything that involves individuals with disabilities always seem to have to be a fight? It's so frustrating! It's a lifelong battle. I've asked the question why often, but I let the "why" go and pick up the torch and continue to fight. Instead of asking "Why the fight?" I say, "Why not? Why wouldn't I fight?" The answer is....."He Ain't Heavy, He's My Brother!"