I grew up in the 1980s. The 80s were initially progressive, somewhat like the 70s before them, but come the late 80s it almost feels like a strain occurred. This strangulation on what I like to call social freedom continues today and I believe it has gotten progressively worse. I was born in 1980, so I had the unique opportunity to experience the entire decade. I remember from around 1983 onward. I especially remember the toys of the 80s.
Like most little kids back then, I had a Cabbage Patch Kid. We held a contest on our website, LI Kids, offering Cabbage Patch Kids for their 25th anniversary. I can’t tell you how many people left a comment about how their sons, grandsons or brothers had Cabbage Patch Kids. I didn’t know they were so popular with boys. One thing I also learned from this contest was that Xavier Roberts, the creator of the Cabbage Patch Kids, doesn’t like them being called dolls. They aren’t dolls, they’re kids. In fact, they were originally called Little People. Perhaps he thought they’d appeal to all kids regardless of gender whereas most boys don’t like to play with what they perceive to be dolls.
Another popular option when I was a kid, though I was a little too old for this, was the My Buddy doll. My younger cousin had a My Buddy. These dolls were specifically designed for boys. They were advertised as being rough and tumble dolls who could go anywhere little boys went. I always thought My Buddy was a little silly, but always took my Cabbage Patch Doll, Daniel, wherever I went. Perhaps it was My Buddy’s funny design? Whatever it was, I know many little boys who had My Buddy Dolls and it was quite acceptable to have one in the 80s.
I’m writing a book about my life. It almost seems sensational in aspects. The main gist of the story is that I was born in 1980. I was diagnosed at age 4 with a neuromuscular disease, Spinal Muscular Atrophy. Raised in a dysfunctional family with an incredibly overbearing mother and a stone cold, yet explosively fiery father, I struggled through a hellish existence at home while enduring a nearly as bad scholastic experience at a high school that didn’t want to provide any services necessary to make my school years run smoothly.
You can get a brief synopsis of my life through my About Me section, but that hardly touches the surface of my life. This also talks about my transition from female to male, as well as the surgery I almost didn’t survive. For a long time, I blamed myself for everything. I’d been told by so many people I was a terrible person, always to blame for all of the trouble that happened in my family. I was told I should be grateful for what ’sacrifices’ my family made, even though those sacrifices came with a price (often abusive in nature). I believed it until I finally opened up to a therapist for the first time (I’d been in therapy since I was five, but never really opened up or spoke - I was rather sullen and that often led to me being blamed for all problems family-oriented) when I was in college. For the first time, I was told, maybe it wasn’t my fault.
That was nearly ten years ago, and I still struggle with the issues caused by my life in a dysfunctional family. The only true sacrifices made were by my older brother, who was often talked into not doing something due to my disability (such as going away to the college of his choice). It’s something I now believe he blames on me, and is part of why we haven’t spoken in five or so years. While my dad is dead, and I’ve come to terms with our tumultuous relationship (we talked a lot while he was in the hospital dying and worked out our issues), I don’t and won’t ever speak to the person I once called my mother.
I can forgive what she did to me, but I will never forget the years of abuse and torment she put me through nor can I forget her response of “so what?” when I confronted her on the telephone about some of the more physically hellish abuse (she never saw it as abuse - she was ‘making me beautiful’ - against my will) she inflicted upon me. She doesn’t see it as abuse, nor does she see it as her fault.
I haven’t written anything on the Muscular Dystrophy Association in a long time. I feel it’s time to formally express my disappointment at some of the latest things that MDA has been doing. Before I get started, MDA is a valid organization in one way. It is doing extensive research into curing the 40+ neuromuscular diseases covered under their organization. That’s about the only good they’re doing. I won’t dispute that fact. What I do dispute is their promises of doing more for all patients with MD.
As a child, I thought MDA could do no wrong. MDA diagnosed my disability (wrongly, I was diagnosed with Werdnig Hoffman (SMA I) when I in fact have Kugelberg-Welander (SMA III)) at age 4. I was the MDA poster child for Northwest Ohio in 1990 and 1991. I was the Ohio State poster child/goodwill ambassador in 1992 and 1993. I was committed to helping raise thousands (if not millions) of dollars for an organization I always thought would have my back.
Things started declining in the early 1990s. In this decade, MDA cut its Camp program from adults. When I was a child, camp had multiple adults attending. For some adults, this was the only vacation they ever got. This is the only time they were able to get out of their home and away from their family (if they lived with parents, able-bodied siblings, spouses, or otherwise). It was their vacation and necessary to their health and well-being. I can’t tell you how much I learned from the adults with various forms of Muscular Dystrophy. If nothing else, they gave me hope of a future. I saw actual adults surviving into adulthood with diseases doctor’s said could possibly kill me or my friends before we finished adolescence. That was one of the most important lessons I learned and without seeing actual adults with MD, I wouldn’t have learned it.
Well, in the 90s, adults were cut from the camp program. MDA said they did it to save money, but it is now apparent this was a first move in shutting adults out of MDA programs. The new rule was, you had to be 21 and under to attend camp. Well, now that rule has been cut, too. This year was the last year those with Muscular Dystrophy between the ages of 18 and 21 were able to attend camp. Now the rule is, you must be under the age of 18 to attend camp (6-17). There have been a plethora of excuses from MDA for why they’ve decided to cut the age again. Saving money was the biggest reason. Another excuse was it cost too much to insure both children and adults, so the adults just don’t get camp.
If that was the only thing that was being taken away from adults, I might turn the other cheek. I do think MDA Camp was vital to the well being of all who attended regardless of age, but it is pretty clear MDA, as a whole, has stopped caring. The organization is about making money; money which pays the CEO of MDA more than the president of the United States makes in one year. He makes over $399,000 per year. Just for reference, that could buy 16, high quality power wheelchairs for those with Muscular Dystrophy or 100 decent manual wheelchairs. This is where your money is going instead of to the patients.
I hear many parents say, MDA has been excellent to me and my children. Yes, they were excellent to me when I was a child, too. Now that I’m adult, MDA has pretty much thrown me to the wolves. Case in point, a few years ago, I tried to go to the MDA in my area. This is not the MDA I grew up with, by the way. This is one in Michigan where I live now. I asked them how long I should schedule my ride for, since I have to travel by public transportation. They told me no more than an hour. So, I told my ride to pick me up within an hour and a half, just because sometimes appointments do run over.
In today’s 80s flashback, I’ve decided to include the first episode from one of my favorite television shows growing up, Transformers. You know how when you look back at the shows you used to watch as a kid you sometimes wonder what you were thinking? Well, having watched this episode for the first time in probably 20-ish years, I can see why I liked this show. It is interesting, engaging, and for a kid’s show has decent writing.
What constitutes abuse? Is it a smack on the face? How about an unpleasant word? Is abuse something deeper or is just something that has to be construed as abuse by the victim of said abuse?
I’ve been in therapy since I was five. That’s about the time I realized I was “different” due to my disability. That’s a pretty early age to realize such a difference (typically kids begin to realize between 8-10, sometimes later). My doctors took no precautions in recommending I go to therapy. I don’t really remember much of it, except I got to play with toys and I never told my therapist anything of substance.
As I got older, and I began to realize my family was a bit dysfunctional, I walked around with a chip on my shoulder. In therapy, I wouldn’t share anything of importance and often treated my therapists like scum. I didn’t want to be there, so why not make them suffer, too? I was deemed a ‘problem child’ with my therapists soaking up every little word my parents said. They believed every half-truth and didn’t even question why I had anger or was struggling more than any normal teenager should.
What became apparent is after “coming out”, the real abuse began. To me, it is abuse. It was unwanted. It was unwarranted. It was unnecessary. The funny thing is, I blamed myself for it, that is until I got into college and “chose” to go to therapy. I had been in therapy so long, by this point, that it was a no-brainer I’d seek out a therapist myself. Except, this time I didn’t ignore my therapist. I didn’t make up things just so they’d leave me alone. I actually spoke to my therapist. I actually explained to them what was going on in my life and for the first time, someone said…”did you ever think this isn’t your fault?”
