Ethics
''Even the smallest of footprints have the power to leave an everlasting imprint on the Earth'' ~ Lisa Clarke
There are three options given when Patau syndrome is diagnosed in-utero. These include:
Essentially the only option giving that gives the child a chance of life is the 3rd option. Babies diagnosed with Patau syndrome often die within the first year, so many patients choose to terminate the pregnancy with a desire to not prolong the eminent grief of their loss – however this can potentially enhance grief. Many others choose to go to full term based on religious or moral beliefs against abortions or they simply want to meet their child even if it is only for a short period of time.[1] [2]
- Direct abortion, which can be permitted up to the second trimester of the pregnancy.
- Terminate the pregnancy by inducing labour, oftentimes this results in death (side effect of the procedure) but is not classified as aborting the foetus.
- Come to full term and give birth to the child.
- Euthanasia - after birth, go to palliative care and wait for the child to pass naturally
- Go to intensive care and give the child its best chance at life.
Essentially the only option giving that gives the child a chance of life is the 3rd option. Babies diagnosed with Patau syndrome often die within the first year, so many patients choose to terminate the pregnancy with a desire to not prolong the eminent grief of their loss – however this can potentially enhance grief. Many others choose to go to full term based on religious or moral beliefs against abortions or they simply want to meet their child even if it is only for a short period of time.[1] [2]
Impact of Disabilities on Society
When searching synonyms for the word ‘disabled’ these sorts of responses appeared:
- Lame - Maimed - Decrepit - Wrecked - Incapable - Hurt - Helpless - Out-of-action - Powerless And the antonyms were things like Strong, healthy, firm and able. It is not fair to classify someone who is disabled as ‘helpless’, ‘incapable’ and ‘powerless’. These people often are more helpful, capable and powerful than those of us who do not suffer from any sort of disability. They are the people making an impact in this world. They are able to view the world in a way that we wont ever understand. Australian comedian and journalist, Stella Young (suffers Osteogenesis Inperfecta) performed a TED talk discussing how we categorize people with disabilities as inspirational when they do ‘normal’, everyday activities. She calls this misplaced sense of admiration, ‘inspirational porn’. In a sense, congratulating a disabled person for completing a simple, everyday task could come across offensive and may even affect them emotionally. It’s like admiring them for being in public with a ‘body like that’. However I don’t completely agree with Stella’s view, in that sometimes, these people are extremely inspirational. When someone who is told they may never walk, gets up and runs… it motivates others. It motivates others to do same. It motivates others to not let people tell them what their limits are. She calls it inspirational porn, but what is wrong with inspiring nations of people because you can overcome? There are copious amounts of stories of people who are not only living normal, everyday lives despite their disabilities but living extensive and impacting lives; because they were and are determined. People like Stephen Hawking, Nick Vujicic and Hellen Keller all had major disabilities yet are changing (or have changed) the world regardless. They are inspiring. They are working at being inspiring. Rather than climbing in a corner and being depressed because they are ‘different’, they are out in the world using their differences to show others that it doesn’t matter who you are, where you come from, or what you have… you can overcome and you can achieve absolutely anything you put your mind to. We need people like this in out society. Stella has a point, we shouldn’t admire someone just because they have a disability but if they are doing things in society despite that fact, than they deserve the all the admiration they receive. |
Stella Youngs TED talk on Inspiration Porn.
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References
[1]Danielsson, K. (2014). Patau Syndrome - Pregnancy or Newborn Diagnosis of Trisomy 13. [online] About.com Miscarriage/Pregnancy Loss. Available at: http://miscarriage.about.com/od/onetimemiscarriages/p/patau.htm [Accessed 16 Aug. 2014].
[2] Guinan, P. and Haque, M. (2005). Patau Syndrome and Perinatal Decision Making. Virtual Mentor, [online] 7(5). Available at: http://virtualmentor.ama-assn.org/2005/05/ccas1-0505.html [Accessed 16 Aug. 2014].
[2] Guinan, P. and Haque, M. (2005). Patau Syndrome and Perinatal Decision Making. Virtual Mentor, [online] 7(5). Available at: http://virtualmentor.ama-assn.org/2005/05/ccas1-0505.html [Accessed 16 Aug. 2014].