Let mercy come and wash away

  • Linkin Park

Before

Each time I type these two commands in the Terminal:

>>> hugo new posts/{name_of_reflection}/index.md
>>> mkdir content/posts/{name_of_reflection}/images

I know I am going to spend next 1 or 2 hours polishing my newly-created blog post. I do not complain, no way! I happily do all I can to deliver the best possible reader experience. I prefer quality over quantity such that I can highlight what is the most important in my reflections.

My aim is always to create the environment where the reader can not only check that I do the work I have to, but more importantly, where she or he can actually learn something. Especially, when a topic is of particular significance like the one I will describe today. After all, many conditions associated with disabilities are not merely a matter of genetics, but also have a rich socio-economic background or may result from negligence.

Bear in mind, this is not a transcript of what I have heard. Rather, it’s an invintation for an open discussion and a place to share my thoughts surrounding issues connected with disabilities.

May

May was quite unfortunate for me because I missed a lot of classes, which was strange. I didn’t get people use to me not being at school. However, my absence had broader implications as I couldn’t meet with my charges, which became a regular thing. That was something undoubtedly worse that missing school because with the material I can easily catch up, but there’s no way one can do the same with relationships.

Although I cannot turn back time, I am not so miserable. I had a possibility to explore other options. In May, folks at Bury Miś organized to two workshops concerning various conditions - from autism spectrum disorders, through Fetal Alcohol Syndrome (FAS) to Attention Deficit Hyperactivity Disorder (ADHD).


Hello Friend
It's a flower I suppose.
Hello Friend
The most recent edition of 'Szuflada' monthly.

Workshops

Before the lecture about disorders and while waiting for others to arrive, there was always something to be done. During first workshops, we packed coffee into pretty bags that we will be selling in MiśTruck. During second workshops, we made flowers with tissue papers. Nice addition, I would say.

After the last soul showed up, we could start.

As I said, we discussed various disorders - their symptons and causes. The scale of intellectual disability was presented as well. The lecturers were volunteers at Bury Miś who are at the same time full-time teachers at schools for people with disabilities so they spoke from both their knowledge and gave examples from their experience.

I’d like to avoid going over every point we talked about (if you want to learn more, there’s plenty of resources out the Internet) and focus on things that surprised me the most.

What I have learned

CRDL

Touch is care, and care is an innate need of all of us.

Thus begin the Experiences section on the CRDL website. CRDL is a very peculiar device for working with people on the spectrum. When touched, CRDL emits various sounds (depending on the configuration and type of touch). This helps people who are on the autism spectrum to familiarize themselves with touch as many of them don’t like close proximity of other people.

Here’s a short video explaining how it works (even though it’s in Dutch, it should give a good overview of the CRDL workings):



I was told that working with CRDL is extremely exhausting both for the patient and the therapist. That’s why a session with CRDL does not exceed 15 minutes, where even those 15 minutes are rare. However, it does pay off because people who used to be afraid of touch, are now okay with it.

FAS

For many people my age it is hard to comprehend how out actions can affect others. We as teenagers are able to see the consequences, but struggle to foresee and prevent them. It may be due to laziness, lack of awareness, I don’t know. But there’s something going on.

Unfortunately, older people often fail to do so as well. The example is FAS because future mothers bear a great deal of responsibility to the health of their children. FAS occurs when a mother consumes alcohol during pregnancy. FAS includes a wide range of both physical impairments and intellectual disabilities.

At Osada Burego Misia, Wętwie, there’s a charge that has FAS. He is before his 30s and before he ended up at Osada, went through a lot of harm at foster family who, unaware of his condition, would beat him for his abnormal behavior with sexual agenda.

This is a sad story, but even worse - it’s not a solitary case. The problem with FAS is that it hard to diagnosed until the end of puberty when the most characteristic symptoms develop. Of course, if a specialist was involved and had an access the background of a patient, it would most probably be spotted. Since people lack imagination and basic knowledge about disorders, people with FAS often encounter social ostracism and are considered “weird.”


Hello Friend
Some more shots of the monthly.
Hello Friend
And more...

Hope

My journey with Bury Miś was an exciting endeavor from the very beginning. Camps, biking, selling cheese, meeting, crafting, and I can go on forever. I gathered invaluable experience about working with people with disabilities, which opened my eyes for many things. First and foremost it made my understand how little do people know about disabilities.

Starting from day-to-day situations such as going by tram. I have heard many times how people react strangely to an old lady leaving her sit for a much younger son. Although it happens often that a granny leaves a sit for her grandkids, in case of people with disabilities it is different. Sometimes, those mums or other family members have no choice but to free this sit because their children have so severe balance impairments that they are unable to stand by themselves in a tram that goes fast and makes rapids moves.

It’s just one example that shows how simple life situation can be easily misinterpreted, but the list does not stop here. Many people do not realize that a “weird” behavior may be a result of some disorder rather than an disobedient kid. That’s unfortune and expose serious holes in education system.

But out world is not that bad. I see more and more people coming to realization the need to share the knowledge about disabilities. With some of these efforts I do not agree, but it does not mean that all are bad. We just need to pick up the right solutions and make an effort.

At the end of the end, we can say to ourselves that we tried. We may have not succeeded, but we did our time which was not wasted.

Learning outcomes:

  • LO 1 Strength and Growth
  • LO 2 Challenge and Skills
  • LO 5 Collaborative Skills
  • LO 6 Global Engagement
  • LO 7 Ethics of Choices and Actions