Self Advocacy and Disability

In the autism community, the term self-advocate and advocacy gets used to describe people, sides and positions. But advocacy relates to disability community as a whole as well. And in general, advocacy, especially self-advocacy is a very good thing and is highly encouraged within the disability community that I have encountered.

Let's start with the basics: what is advocacy?

The definition of advocacy, according to the Shorter Oxford English Dictionary (5th Edition, pp33) is:

"The function of an advocate; pleading in support of".

In the same dictionary, the definition of an advocate as noun is:

" 1. a person whose profession is to plead causes in courts of law. 2. A person who pleads, intercedes, or speaks for another. [3 has been omitted since it's dated] 4. A person who speaks in favour of".

The definition of advocate as a verb is

"1. plead in favour of, defend; recommend publicly. 2. Act as advocate for."

You can also look it up on dictionary.com

So advocacy is speaking on behalf of someone else. As children, our parents advocate for us, for medical care, school, clothing, food, etc. It makes sense, since, as children, we don't know what we need and how to go about asking for it. However, when it comes to disabilities, this is taken a step further.

Night Storm, on her blog PrismSong, wrote about including children in the decision making process of their medical treatments, accommodations and special needs, including finding ways for non-verbal autists to participate as well. And well, I can't paraphrase it in a way that does it justice, so please bear with a block quote:

"So I am sure people are now thinking 'So if I wash off all the layers, is the bottom line that Bard Child is against treatment?' the answer is 'no', I am not against treatment of malign behaviors. I am against is this rational that hiding your child your daughter in the medical dark is ethical. Now I understand that there are a lot of exceptions and . People would say 'my child is non-verbal, I am doing this treatment so s/he can become verbal.' Ok then I can understand that rational very well, but would it be better to find a language that your child can use that isn't verbal-based? Perhaps something that s/he he can use easily and communicate clearly with? Perhaps the first step is not "fix the child" but rather "start communication". Once he s/he has communication method that is him/her is comfortable using and can be understood (pictures, sign, type), the next step is the one many parents ignore. Listen to what they have to say. Ask them their thoughts on their perspective:

* Do you feel that you are different/disabled?
* Do you feel left out a lot in school and home?
* What do you feel that is bothering you the most?
* What can we do to make you feel better?
* What are you're goals?
* How can we reach them together?

Understand their perspective will help figure out what treatments would be effective and what treatments they want. It will also help clarify some things that you might not be aware of. Such as the recognition that s/he is disabled. Some kids are aware at a young age they are disabled or feel that they are not like their peers. They might not have all the communication skills to properly state it. Now I know people are like 'well you don't need consent we're their parents/guardians.' Legally, yes you don't need their permission. But including them in the concept of treatment and what their thoughts on it is what I am trying to communicate here.

Now you shouldn't include them in very single detail but telling them the side-effects of their Ritalin is better that listening to them complain about how anxious they feel and wonder if they know it's just side-effect. Now I don't believe two year old should worry about the side-effects of their medication(if they are on meds), but eight-year old on 50mgs of Adderal should know the effects it has on him not the just good but the bad too. That way he could reason that the anxiousness and slight light-headedness is just minor effect and nothing to be totally worried about, but sever dizziness is something that he should tell ma and pa about. How you should approuch treatment to you child should be age appropriate. Asking them how they feel after each therapy session and getting feedback from them is teaching them an important skill in relay and to tell mom and dad if something isn't working. Once their older like around 10-13 then actually asking them if "Do what do you think about putting you on new meds, do you want to continue meds? What do want to explore other treatments?" Eventually there will be point in which they want to refuse treatment all together if nothing is effective anymore.

I guess when it comes down it's less "asking permission' but including them in discussion. Education on what treatments they are reciving is probably the best skill that you can teach them. They can't rely on doctors all the time, they should build the skills needed to learn what medications/therapies effect them and how effective are they."

And I completely agree. It is important for children to be included; not only does it help the child to understand what is going on. When you include the children, you open the door for discussion, understanding and communication. I mean, why bother trying to communicate when what you say isn't going to be regarded in any of the decision making? This gives the child a reason to communicate, to be a part of what is happening, and helps parents to understand the child and be able to advocate better for the child.

This can also be taken a step further. Including the child in the decision making and discussion of accommodations, supports and special needs also sets the foundation for self-advocacy. Self-advocacy is an important ability, as a child grows up to be an adult, s/he is expected to be able to speak for themselves, to be able to say what they need and why. By being involved with the decision making, the child-now-adult will know and have the understanding in order to do what his or her parents were doing before: advocating on their behalf.

This is self-advocacy, the ability to speak for oneself in regards of needs, supports and accommodations. As independent adults, people are expected to do this every day, and nowadays, this includes those in the disability community.

When I graduated from high school, my special needs teacher worked very hard to get me into a transition program for students with learning disabilities going into post-secondary education. This has to be one of the best things that have happened to me, as I was able to meet other students who understood what it was like to have difficulties in class and with social skills, test out assistive technology and learned how to meet with teachers and discuss my needs in the classroom as well as learning how to navigate in campus life.

In other words, I learned what accommodations works best for me, and I learned how to ask for them and explain why I need them. That is self-advocacy.

Now, I understand that university and maybe even college is not for everyone; however, you can see how learning self-advocacy skills is beneficial for people with disabilities, including autistic people. As we grow older, we become adults in the eyes of society and are expected to be independent adults as much as possible. As a Western society, independence is highly regarded, and being able to self-advocate is a part of being independent.

As for being independent, well, let's put it this way: I'm a semi-independent autistic women with ADHD and LD living with her parents and on social assistance. There is a temptation for me to integrate myself into the family in such a way so that I would always be dependent on others to help me function and advocate for me. I fight that temptation as much as possible, as I am aware that the support and services I need will not and might not always be available to me.

Right now, that means my parents. While I hate to think of it, I know that my parents aren't going to live forever, and so, I work with them to ensure that I can take care of myself. Even though I make plans and get supports into place for the times when I'm at my worse, this means that I have to have the skills to be as independent as possible; lifestyle skills like cooking, cleaning, laundry, healthy eating, and good sleeping patterns, health care services, financial services, repair services....

have I missed anything? Oh yes, the ability to know when, why and how to ask for help. In other words, self-advocacy.

Therefore, self-advocacy is about developing independent living skills as well as becoming aware of one's limits, one's strengths, and the point where one needs to ask for help and what one needs as supports. This isn't easy, in terms of developing those skills and in terms of personal pride. However, it helps us to be included in society, to live as independently as possible and at the same time, gives us the tools we need to be able to ensure that our needs are being met.

Self-advocacy is not about taking away services from people who need it, but empowering people to communicate and stand up for themselves. We are not a faceless movement, but individuals who want each person with disabilities to get the services they need and live as independently as possible. We are not fear-mongers bent on letting things be, but are working towards making a difference, not just in our own lives, but in the lives of others as well. We are working for a change, for a better future and a life where we can communicate, work and play.

So please, when you see a person stating that they are a self-advocate or is working for self-advocacy, remember that to be a self-advocate is to build strength and skills for independence, with and without disabilities.