Blog Week 5

The information provided for looking at the topics of self-determination and the cost of empowerment and advocacy, to name a few, was a little overwhelming at times and also led me to really question my thoughts about some of these topics again. It is easy to be swayed at times and after each reading, or seeing statistics, or a video, it really does lead one to think and evaluate again.  Having a variety of resources to look at and especially with the videos, to gain firsthand accounts of what is like to live as a person with disabilities and some of the struggle and daily challenges that one would face, in terms of the physical, emotional, or social aspects, but also other costs which can come in many different forms and are not all defined in measurable ways.

Stella

In the video about Stella Young, I found her to be really enjoyable to listen to because of the story that she was telling and her way of presenting the information and her experiences. Her message that we have been lied to about disabilities and that it does not make you exceptional, really stuck in my mind. And the reason is her follow up with “it’s not the disability that makes you exceptional but the questioning of it that does”. She is honest about her reason for speaking, that she is not there to inspire and does not like being told that she’s brave, which she joked about how somebody basically congratulates her for getting up in the morning and remembering her own name. And referring to “inspiration porn” and the images that objectify one group for another and the objectification of the person with disabilities for the benefit of a person without disabilities so that they think “wow my life to be worse.” I found it interesting that she defined being disabled more on a social level and by society rather than through her own body. But definitely left a lasting impression by her positive outlook, and definitely her humor and innovative thinking of her example using barbeque tongs for picking up something you drop and for charging a cellphone by using the chair battery.

The message overall from her is it that it does take determination and that being in control, it’s a combination of things and it does not all come from being disabled but it is a mixture of attitude of the person themselves as well as others in society.

Self-determination
Self-determination is a critical element because if you can believe in designing your plan and controlling your destiny, it will allow a person to be more goal directed, self-regulated and autonomous.  The development starts during childhood but for children, it is the adults who makes the decision even though it they are well-meaning and want to protect the person with disabilities. It is crucial for children to have opportunities to practice the skills enough before leaving high school so that they can be successful in their adulthood. Self-determination means developing the skills of self-awareness, creativity, problem solving, ways to be assertive, and advocacy. As we learned, mentors can be helpful and share their experiences and help for transitions, this can be through the school or through other organizations or agencies which offer programs. The family also needs support in giving opportunities for the students.

You learn self-determination through these components of choice making and problem solving, decision making, common goal setting. But also through some self-analysis through self-regulation, advocacy, awareness, and efficacy; all of which are learned through real world experiences and learning to take risks, make mistakes and reflect. But for persons to develop this, they cannot be over-protected and they learn from failure and for making choices on their own.

Let’s Talk

In the “Let’s talk about intellectual disabilities” video, Loretta really gave a good message and I found her story to be very interesting as well and you could tell she was very passionate about the message she wanted to share with people and being an advocate and how the involvement in the Special Olympics is what she needed, it seems, in order get that motivation.

She says that people have to be fearless and not afraid to talk to people, and to stand up against those who tell you what you cannot do. Having an intellectual disability, and being bullied, but also having anger issues, she was very open her about childhood experience.  This is important because her message can be conveyed to someone that may be in a similar situation and may feel they are helpfulness.  And her example about not being treated by the dentist because she was different, just is appalling to me that people would be treated this way.  Her involvement with Special Olympics provided healthcare which her family did not have and gave community support and advocated for persons with disabilities. These are some of the components that are necessary for self-determination and empowerment. I agree it is important for all people to find a support system, depending on each person’s individual needs. Mentors are important and having a resource like the Special Olympics is a great way to do this. These are skills that persons with disabilities have to develop but also that persons without disabilities need as well in order to achieve success in society.

The Powerpoint that explained the types of communication and how to self-advocate when a person may or may not have a voice, really clarified some of these areas as well. In particular, the types of alternative communication that are available for persons, especially those where the majority of needs fall into groups of intellectual disabilities, autism spectrum disorder, traumatic brain injury or perhaps an illness prevents them from speaking. I found the “rules of engagement” to be interesting when it talked about communicating with people when the traditional method of using a voice is not available.

The lesson learned is that people don’t need a literal voice, there are other ways to communicate and they can be low or high technology items, but at the root of this is still that people have to find a voice so they can assert what is needed. When people can self- advocate, and voice is increased then the assumptions about the person decrease and people are an equal positions of power. As  result,  persons with disabilities can decide what they need rather than having the decisions made for them by parents or overprotective family, or even educators. But it is multi-faceted and the elements including self-awareness and knowledge of rights, ways of communication and forms of leadership are all components that can lead to great success and empowerment in society.

Cost of Empowerment

The most difficult part to grasp was related to the cost of empowerment and if it will ever truly be achieved. It seems that when you hear the word costs, the immediate association is with a price or tangible measures or meaning money. But as we have learned with each passing week, there are many different costs involved in the life of a person with disabilities and those who are interacting with them or providing for them as well. Some of the statistics provided,  I am still not sure that in my mind I can believe some of the differences, however looking at just for example the number of persons with disabilities related to the number(15 million persons capable of working) compared with the 60 percent that are on disability and can receive unemployment. Under costs,  it seems that more people perhaps could be employed if costs was undertaken by an employer, such as providing some type of accessible device to make work more accessible for persons with disabilities.

AAC

One other area of this week’s focus was seeing the augmentative video and the different forms of communication that can be used to express one’s thoughts, ranging from no tech to high tech and the methods used that one must take for the persons with disabilities to learn to use these various devices, which can be emotionally, mentally, and physically draining. I find it amazing that so much technology exists so that it enables persons who are unable to communicate, to function and use words for convey meaning whether it be to use an eye gaze or higher technology such as a PRC or DynaVox. During some of my volunteer hours I had the opportunity to look at many of these devices and seeing the functionality of them and learn firsthand how the children are taught how to use some of them. I find it also brings in elements of self-determination and empowerment as well because the persons have to work harder and set goals, make choices, but also through these devices have a way to express themselves and communicate with others which enhances their empowerment and, self-determination and ability to be advocates for themselves and for others.