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Posted 2015-05-09T03:57:00Z

Self-Advocacy

                                                                                                        SELF – ADVOCACY AS A WOMAN

 

~ Alexandra, Todd and Dundas[3] claim that the traditional sexist view of women as too emotional and irrational is perpetuated by medicine. There is evidence to suggest women's complaints are taken less seriously than men's as doctors view them as over-emotional and therefore, exaggerating their symptoms. Symonds claims doctors feel that when women ask doctors questions, thus being active in their own health care, this is taken as unnatural as women are traditionally considered as passive.

                                                                                                                ADVOCATING FOR MYSELF

From the time I was young, my parents raised me to be independent and forward thinking.  They raised me to stand up for my rights and the rights of others.  They raised me to ask questions, argue respectfully, gather facts, and “don’t just take people’s word” for things, and to think outside the box.  I was raised to be a leader, not a follower….and to THINK for myself.  I was born to take care of others, by the nurturing ways of my mom alone.  My parents were my best friends and great examples of how to be….and how not to be.

My dad served in the military and survived to come home as a Vietnam Veteran from the Army and my mom was raised as a “Navy brat (as she calls herself)”.  They know the meaning of sacrifice on more levels than I could even begin to understand.  My sister died when I was 9.  She had Cystic Fibrosis, she was 7.  I cannot imagine, even for a molecule of a second, losing one of my children to death, before me.  If this whole experience since the wreck, has done nothing else….it has given me more compassion for my parents.  My dad died in 2005.  He was declared 100% disabled posthumously (after death based on his autopsy).  He died from Non-Hodgkin’s Lymphoma (he got from Agent Orange) that had riddled his whole body, even to his bone marrow.  He was misdiagnosed for years by the VA, only to be diagnosed by a Civilian/Level 1 Trauma hospital. He was dead within 3 days from diagnosis.  That is a whole other story not meant for this blogging.  However, this changed my view of Medicine to some degree.  It made me acutely aware of gaps in healthcare in general.  I realized something about Doctors and Healthcare Providers.  They were not infallible, and they were not always miracle workers, and I learned that some even flat out lie, without any conscience. 

I learned to speak up for my own children, my family, myself.  Advocating for accurate and adequate care can sometimes make you appear cocky or rude, but that is never the approach I felt or thought about in my heart.  I just value life and things being done properly.  I however always did a LOT of research and asked a lot of questions.  I found that doctors who really care don’t mind the questions, and some even thank you for the research and effort and don’t ACT like they feel “threatened”. Don’t get me wrong….I believe that MOST Doctors are compassionate, honest, and amazing.  They REALLY REALLY care.   My current PCP would be a GREAT example of one of those kind of Doctors.  If you get one of those, cherish them and hold them close.  They ACTUALLY care about your health and making a difference.  Some Surgeons and Specialists are absolute “Rock Stars” and others are the “groupies” that wish they were Rock Stars.

I have always loved “Medicine”.  I used to post “office times” on my bedroom door when I was 5 and 6 years old.  I would schedule appointments and charge my family for my “advice” and “treatment” as a young “Physician”. I remember having a very healthy collection of brochures, stickers,   My goal growing up was always to be a Pediatrician and  Pediatric Clinical Psychologist.  Funny how life takes us in different directions.  However, I stayed loyal to Medicine and knew all the bone names and most of the muscles by the time I graduated from High School.  I always kept up on the newest technological advances prehospital and scientifically.  Medicine was my first love.

I still have all my long term memories, education, and experiences - as you can see and read.  Since the wreck, some days it feels like that is all I have.  Then I realized that in order to LIVE….truly LIVE – I needed to push back at life and not give up due to my “new normal” which seemingly limited me on numerous levels – especially in my ability to process things at the speed I used to.  I needed to KNOW what was going on with me and WHY.  Why do I feel so differently.  Why is it sooo hard for me to “DO” what I used to be able to “Do”?

I may never know the source of all my “new normals” medically speaking.  However, I never give up HOPE in getting back to a quality of life that I had before, and perhaps took for granted to some degree.

So when I ask questions, or bring in a printed off discovery of research I have found, or ask about some newfound test, lab, or what have you….it is NOT because I think you are a crappy Doctor or Healthcare Provider, it’s because I am advocating for myself and I don’t know what you do or do not know.  I understand that Medicine is changing every day and there are always amazing and new developments. I respect the Science and am blessed to still have that respect after my wreck.  Please don’t be offended if I know the proper terminology….or don’t know…..or that I want to know WHY you want to do something, or NOT do something…this is MY body and MY life.  Please don’t become offended if my tolerance or patience isn’t what you think it should be, or get frustrated if I don’t know how to explain something to you at the speed you desire.  It is just as frustrating to my own self as well, not to be able to do this. I value your sacrifices you have had to make to get where you are at in your life,  and your effort, and your time…..please value mine as well.

                                                                                              DEFINITION OF SELF-ADVOCACY

Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.

- See more at: http://www.wrightslaw.com/info/self.advocacy.htm#sthash.FDfELCCQ.dpuf

Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights.  It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)

-See more at: www.ehhs.kent.edu/cite/CASAP/docs/SADef+tips.doc

Self-advocacy is when you speak up for yourself, when you decide what YOU want to do now or in the future, you are a self-advocate. Self-advocacy means understanding your strengths and weaknesses, developing personal goals, being assertive (meaning standing up for yourself), and making decisions. Self-advocacy also means communicating your needs and making decisions about the supports necessary to meet those needs (Martin Huber-Marshall, & Maxon, 1993; Stodden, 2000). 

-See more at: http://www.brainline.org/content/2009/11/self-advocacy.html

                      http://www.brainline.org/landing_pages/categories/advocacy.html

and

                       http://www.braininjurynetwork.org/braininjuryadvocacy.html

 

                                                                                                                  OTHER RESOURCES

 Here are other self-advocacy Resources available to you.  This is NOT an exhaustive list.  You will be able to find your own resources as well, check it out, join an online support group, but begin by advocating for yourself or a loved one or friend.

http://www.sabeusa.org/

http://www.theriotrocks.org/

 http://en.wikipedia.org/wiki/Self-advocacy

 

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