Matthew Purinton

Council For Relationships

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Is disease eradication = genocide? Is there any room for people with disabilities in the future?

While the benefits of the eradication of a disease is self-explanatory it has a dark side. If polio never existed humanity would have never had FDR, Tobin Siebers or Ed Roberts. I was born without arms but hands, and legs but not knees or ankles. I am in constant pain. If I took a pill to eliminate my disability, no big deal. If the 600 people around the world with my disability made the same decision, the world would weep because an entire tribe of man would be gone. In my role as a psychotherapist I am able to help people with all kinds of pain because I've spent the last 24 yrs. learning to thrive with my own pain. The greatest gift I can give humanity is my unique experience, an experience that may die as the mysteries contained in my blood is revealed. If disability disappears the systemic pathologies that it illuminates will remain, limiting humankind for all time..

  • May 25 2011: Wow that's a crazy point. Progress in the medical world will not slow down and our society tends to normalize itself whenever it has the chance. I feel that future treatments and cures will become so accessible that anyone refusing a miracle pill will come off as enjoying their pain rather than valuing it.

    Your experience is not defined by the disability itself but by your response to that disability. Allowing disability to remain in the world if we have the tools to remove it seems like an unnecessary obstacle put forth in the hopes that the person will overcome it. We can no longer find courage in our world quite like the gladiators of ancient Rome when faced with a lion in the Coliseum. Who knows what kind of artists we lost when acid was made illegal.

    Do we lose more than we gain by eliminating disability? I don't know.
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    Jun 10 2011: Great moral question. I think there is a flowing yin yang relation to this though. Some diseases like polio are on there way out. At the same time we are getting much better at patching up people from accidents that would have killed previous generations. So yes our generation is not used to seeing people born with missing limbs, but we are much more used to seeing people return from war sans an arm, or leg. The details may change but I am sure you will be able to keep all to busy.
  • May 30 2011: Here i think the negetive effects of such diseases do not justify allowing them to exist. While you raise valid points that such disabilities create unique experience for sufferers, and certainatly the experiences you share are inspiring, the problem exists as such:

    When there is the potential to erradicate such diseases, the experience of such diseases and resultant disability becomes a choice. Personal and bodily autonomy is therefore compromised when the option to choose [could] exist, and by non-eradiacation the right to choice is lost.
    With such high consequence results to ones life, removing the right to choice is abhorent. Therefore erradication is the only acceptable option.
  • May 29 2011: Matthew,
    Although I can not relate to your pain I do understand the pain issue. I have all 4 of my limbs however, do to having polio in 1958 and today now dealing with Post Polio Syndrome PPS. PPS will happen with every polio victim and it is a rapped breaking down of the good muscles that were left. I have never allowed my polio to stop me from doing anything, I just found a different way to do it. I relate to my pain this way, every day I am blessed more than most because 1 or 2 pains might leave for a while all to get a different pain. Sometimes the pain leads to no longer doing something that once could do because those muscles have had it.

    I know this about my life, I would not being doing what I am doing today and I would not be the man of Christ I am today if I had been normal.
    You are correct about your greatest gift to humanity being how unique you are and with that I say keep up the great job. At the same time you would never be the person you are today if you had not had this disability. There are many with disabilities that sit around feeling sorry for themselves or saying why me?

    I chose to give back to kids through Pet Therapy. I have been involved with volunteering now 6.5 yrs as the Pet Therapy Chairman, I have ran 2 special need programs, and I just started Paws For Justice for abused kids that must testify in court. Yes, it wares me out to the point that it takes a few days to recover. However, regardless there are kids hurting and all they need is a little hope from you and I.

    Matthew and anyone who thinks they have it rough in life, Google this guy Nick Vujicic and then tell me you have it worse than him. This guys story is something to inspire anyone.

    Matthew, I will pray for you. Take care of yourself.

    Scott
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      May 29 2011: Scott, I hope you don't mind my thanking you for sharing your life with us.
      I hope that you will also share it in the comments under the most recent talk on eliminating polio if you have not done so already for the benefit of the larger TED community.

      Matthew and Scott- if nothing else your life has inspired me and I hope that reminds you of how much your lives mean.
  • May 25 2011: I don't want to contract Polio. If someone does want to contract Polio for the 'unique experience' then I say give it to them on two conditions:
    1. That person cannot spread Polio to others who have not chosen to have it.
    If a 1000% full-proof method can be found to prevent the spread of the virus to those who don't want it then I'm not going to argue against it. That will be possible because if they do eradicate Polio it will still exist in a lab somewhere like Smallpox still does.
    2. That person must take full responsibility for their decision. That means no subsidised medical care at all. I'm not paying my hard earned tax dollars for someone that chooses to be sick unless that person allows themselves to be studied, researched etc for the benefit of all. Then they earn the tax dollars.
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      May 25 2011: Gilbert, I am aware that you are feeling passionately about this because I read the battle you are waging on the polio TED talk. I would just ask you to read through Matthew's question and try to read what his heart is asking you.
  • May 25 2011: Hi Matthew, disease eradication or the elimination of disabilities does not equate genocide. It would simply mean than man has elevated himself to a point where suffering no longer occurs. You are correct in saying that misfortune and suffering give us great and courageous people, like you, and from them comes life lessons. Your life has great meaning and despite your pain and physical differences, you are using it to help others. The lesson for others like me is one of inspiration, compassion and gratitude. You have reminded me not to whine and complain about whatever trivial nuisances I may encounter during the day. Thank you.
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    May 25 2011: Dear Mathew
    "The greatest gift I can give humanity is my unique experience"
    could you please share your unique experience in details so we can benefit from it
    I suggest a YouTube Video will be the fastest and easy way for sharing
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    May 25 2011: I think it is a little strange to oppose getting rid of Polio to have more people understand suffering. Please don't tell me that if you would have the chance to get rid of your pain now by a simple shot you would hesitate for a second. Of course the life story of a lot of people would have turned out different but suffering because of Polio isn't something I would wish on my worst enemy. And certainly not on my fellow activists.

    And of course there will be room and acceptance for people with disabilities in the future. Please don't mix up opposing Polio and opposing the victims of Polio and other diseases. Genocide means killing humans because they belong to a certain group. Relieving or preventing their pain isn't Genocide.
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    May 25 2011: Hi Matthew!

    Man, are you ever a certified TEDster! I love the way you laid your situation out for all of us to consider and challenged us to think about what makes a life worthy. Your approach to this glows with honesty and guts!

    So I respond to your challenge this way: Your question reminds me of a Star Trek Next Generation episode (I watched Star Trek with all my sons when they were young- and still love it -but don't tell anyone, OK?) Geordie, an engineer on the ship was born blind. He helps to save a planet of people who believe in eugenics by adapting his visor (the glasses that help him see) and using them in a creative way. He makes the point that if his parents had done what was routinely done on their planet their whole species would have been lost. It was only through people believing that his life had meaning that he was able to grow up and have greater meaning than average. I loved that episode and I remember it vividly after many years. I also believe what Geordie pointed out with my whole heart.

    Now, I see infectious diseases as invaders that need to be eradicated but recently in another posting on species near extinction, I made the point that even malaria has survival benefits for some people with sickle cell anaemia. While there is nobility in overcoming suffering, I see none in inviting or encouraging it. You were born you- one more way to be human. Your unique experience is very valuable and would still be valuable if every infectious disease was gone - but I would not wish you one more moment of pain on you and I do not wish it for anyone else. Your life is valuable for more than just what you can do for others. It is valuable as a unique existence.
  • May 25 2011: Matthew,

    Eradication of a virus need not be a reflection of the value of human beings. The unique experience you speak of is a great gift. However, your gift to the world would be just as valuable whether you contract Polio today or not.

    It is a stretch of imagination I cannot leap to decide that Polio infection would be a good thing because of the unique experience it offers. We must remember the many who have lived with this infection, but need not subject others to it for the sake of a philosophical argument over unique experience.

    The world will not weep the loss of Polio, much as we do not mourn the disappearance of Smallpox. Those who would have offered perspective through their situations will still do so - simply by another different but just as unique lens.