Finding Me in the Mess

Always Advocating

When I decided to make a blog about my life I have realized there is one element that will be prevalent in my entries. Advocating because even though we have come so far when it comes to how we treat and care for disabled people we have miles to go. It's hard not to have an element of this in everything I write because my life is affected by it on a daily basis. Not just with having issues finding parking, activities everyone in my family can be part of, or access to public places. My life has been changed by my children's disabilities. I use the term disability because that is what they have and its not a negative word. It's been hard going online because I see so many groups in a panic over losing funding having groups dismantled. Recently my state of Minnesota is allowing seclusion rooms as long as parents agree with the use. The issue is they have inherently been used on minorities and people of color. Plus a lot of these children are non-verbal so if it happens even its a mistake they cannot tell anyone.

This is not a political issue because the rights of disabled people have been ignored or pushed aside for a very long time. This is a humanitarian one, but when changes are made its met with a lot of backlash. Judgment, anger and oddly a lot of resentment comes up when accommodations are brought up. Why would anyone think it's entitled to have handicap parking available for handicap people? I have a hard going to some places because they don't have push button to open them. My son is in a stroller but really its like a wheel chair. It is a piece of medical equipment I need to transport him. He is only 37 pounds but when carrying him he will push himself back, squirm and shift because he doesn't how to help me hold him. It's not safe and the safest way to get him places is in it. Now I have a wheel chair lift which takes a lot of space to get him out. I need the van accessible spots but a lot times there isn't one or they isn't enough. One clinic he went to had 10 handicap parking spots which was great. Then the parking lot was repaved and now it has less than half. The last time I was there I to park across the lot and when I got out someone was parked next to me. I now have stickers but people don't always pay attention to them. I had on person park onto the striped area next to the handicap spot and I had to ask them to move their car because it made it harder for me to get son off the ramp. The person actually annoyed and made a comment how I was parked on it too. I was but it was only a couple of inches. His girlfriend heard and apologized to me and gave him the stink eye. They did move their car and I was able to use the ramp. My family and I had gone to a community event and the splash pad was free for the day. Everything went well and we all had a great time. We did get a parking spot and after we got everyone packed in someone parked next to us. The space next to us is not for parking a fact that not everyone understands. That's why it has stripes on it. An older gentleman got out and my husband said it's not a parking spot. He seemed cordial enough and we went our way. I looked back and noticed he didn't move his car and it didn't look like he was going to either.

Before I was fully introduced into a world where I see how harder it is to navigate in it and the resentment that comes with it. It does feel bitter when something that used to be easy now is harder.

Plus because of my life I also see a lot more stories of tragedies too. One a mother drowned her daughter because she was diagnosed with Autism. She felt devastated by the diagnosis. There is other cases too which shows why we still need an awareness day, month or all the time. Or a child who asphyxiated on the way to school because the straps on her adaptive stroller tightened and killer her. She had a para sitting next to her but was on her phone the whole time and didn't notice the child's distress. She was nonverbal, but that doesn't mean silent. She had made sounds that she was in distress but what ignored. The last story is one of the worst. A teacher made a disabled child eat their own vomit. You read that correctly . After forcing a student to eat something they didn't want to the student became sick. The teacher then shamed them and forced them to eat it. How a person can work with special needs children and treat one like this is alarming. I have learned the hard not all people who work with disabled children should.

So to this wrap this up, because I could go and on about it. I have a saying, Always Advocating because there is a need for it. Until we have a world where children aren't murdered for a diagnosis, children dying at school, and children being excluded then we need to continue to advocate.