By Natalie Weaver
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February 9, 2022
If you haven't heard the term ableism before, I can give you the simplified version. Ableism is the belief that non-disabled people are better than disabled people. It implies that able bodies are the standard to go by, and these beliefs create an inaccessible, dangerous and unaccepting world. There is much more to it, and you can find detailed articles on this matter written by disabled people. We must start listening to disabled activists because their work is vital to us. I know I am better for it, and more importantly, I was a better mother to Sophia because of it. I had my ableism to unlearn, as do most people. It didn't take long after my child's death for people to start erasing the disabilities and facial differences that made Sophia, Sophia. I was bombarded with "well-meaning" wishes wrapped in horrible ableism. I heard awful things like: "You should find happiness knowing she is normal now." "You should feel relief that she is no longer a burden to you and your family." "You can smile now, knowing she looks normal now." "You should be grateful because her disabilities are gone." "You are a selfish mother for wishing she was here with you because she's in a better place" These are just a few examples of the many messages I received after my child's death. These types of examples of ableism are the very harmful belief that disabled people are better off dead. Can you imagine being told this about the death of someone you love? Probably not. Yet, somehow these types of comments were acceptable in some people's eyes because my child was disabled. When I asked people to stop saying hurtful things about my child, I was called ungrateful and worse because, after all, they were just trying to help. I noticed that nothing angered or turned people against me more quickly than expressing that their "well-meaning" comments about my child's death were harmful to me. We should want to do better when we know better, especially when trying to support grieving parents, but that wasn't the case. Their responses were filled with anger and hate. Were people becoming angry because they were told they aren't helping or because they hold so tightly to their beliefs that disability is bad and that death is better than having a disability? I've spent long enough advocating for Sophia and working to normalize facial differences and profound disabilities to know the answer. Unfortunately, in most cases, it is the latter. I experienced this type of anger long before Sophia's death. However, it was incomprehensible to me that even after my child's death, I was still fighting for her right to exist, to be loved as she was, and for my right to feel devastated and grieve her death because she was disabled. Not only was I dealing with the death of my child, now people were trying to erase the disabilities and facial differences that were a part of what made her my Sweet Sophia. I had to read beliefs like this and the everyday harmful comments people tell bereaved parents when they express their deep pain. People like to remind us that we have other children to think about as if we've somehow forgotten or that it's time to move on as if the death of our child is something we will ever get over. The lack of understanding, unsolicited opinions, and advice was overwhelming. I understand that some parents find relief in believing their child's disabilities have disappeared after their death, but not all parents feel that way. I am one of those parents, and I know many others who feel the same. To erase our child's disabilities after their death is to erase parts of them that made them who they were. My child's disabilities and facial differences are a part of what made her who she was and why she was so damn impressive. When I picture my child now, I see her rolling around freely in her cool neon green wheelchair we picked out together. I see her beautifully unique face, and I see her speaking to me with her beautiful and expressive eyes. That's what comforts me. I don't erase Sophia's disabilities and facial differences because doing that erases the parts that made her who she was. We loved all of who she was, her personality, disabilities, facial differences, and all. If you must say something, you can say that Sophia is free of the medical conditions that caused her pain and free of the conditions that led to her death. If God and heaven are what you believe in, you can tell me heaven is fully accessible. Tell me her differences are celebrated. Tell me that everyone there can see her soul, read her expressive eyes, and that no words are needed to understand her. Tell me she experiences nothing but love, kindness, and acceptance. The reality of child loss is that nothing you say will make us feel better or take away our pain. The best way to support a grieving parent is to allow us to feel and express our heart-shattering pain. Bring up our child, sit with us in our pain, and acknowledge how bad it is. Don't try to bright side us because there is no bright side to losing a child, disabled or not. You or someone close to you will be touched by disability at some point in your life. Disability is a natural part of life. It's way past time that we unlearn ableist behaviors toward disabled people in life and death.