Musings of a Marfan Mom

A Thoughtful Thursday

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I’ve come across a few chronic illness themed articles recently that I found so thought provoking that I’d like to share them with you. All of them focus on chronic illness.

A Marf whom I admire, Angela, introduced me to this first article. Unspeakable Conversations was written by a severely disabled lawyer, Harriet McBryde Johnson. In it, the passionate disability rights activist discusses her debates with Prof. Peter Singer, a Princeton philosopher who advocates infanticide (among other things). The heart of their disagreements comes from the question of whether those with disabilities are inherently worse-off than able-bodied people.

I’ve said many times that I wouldn’t have wanted my parents to choose not to have me just because I have Marfan. But, does having Marfan make me worse-off? In some ways, I suppose that it does. I have pain that my able-bodied friends do not. I’ve been discriminated against (especially in graduate school!) based on my “disability” status. I don’t have some of the options for pregnancy/birthing/babywearing that other women have. However, I’ve had lots of opportunities that many of my friends haven’t: the chance to travel to two other countries, presenting research, completing a Masters degree, having a baby, etc. This comparison didn’t help me answer the question at hand, as it left me with an unclear answer.

I decided to remove Marfan and insert other things about me to see if the negatives still held true. Does being biracial/LDS/female sometimes make me worse-off? Have I ever been discriminated against for these things? Has anyone ever made an unfair assumption about me based on these traits? Have any of them affected my ability to make choices? I would answer yes, but I don’t think most people would say that I am worse-off for being any of those things (at least not in a “you’d be better off dead” sort of way). Therefore, I don’t think I’m worse off for having a chronic illness.

The second article is actually a website: Choices that Matter. The author, Ellen Painter Dollar, has another connective tissue disorder – osteogenesis imperfecta – as does her daughter. Her blog examines “ethics and theology of assisted reproduction and genetic screening,” as well as living with her disability.

Finally, a short essay on Aspergers syndrome that my husband, who has the disorder, wrote was featured on ScientificBlogging.com. I’m really proud of him!!!

What do you think about these articles? Do you agree with any of them? Why or why not?

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6 Comments

  1. Wow. Thanks for commenting on my Saints win post (Unbelievable) the other night. I’m playing catch up & am sorry I haven’t made it by your site sooner. What brought your brother to New Orleans? I have never heard of Marfan until today. Like for me, most people have never heard of Scleroderma until they meet me. Not comparing the two, but I know that you & I could compare notes on some of the things these diseases/disorders bring into our life. I really like this post. Sure, having Scleroderma complicates my life. I’ve been treated in negative ways due to it before. If I remove that from my ‘disclosure’, and I’m just a non-working white woman with a Master’s degree, a Methodist attending Baptist churches, an Air Force wife, and a member of a family that is not ‘close’ even in the loosest of terms… those things still bring negativity from others, just like they all bring blessings & joy. It might not makes sense, not knowing the details behind those things & I can’t even touch being biracial, but regardless of who we are, someone is always going to make an assumption. Those assumptions may be unfair, untrue, and unkind.

    I’ll have to read the articles you posted. Being a counselor, I’m intrigued & always have been by Asperger’s. I come into a lot of contact with clients with AS & I’m who my friends always come to when they think their child may have AS. <– just like when someone finds out I'm a counselor, no matter where we are (i.e. grocery store line), "oh, well let me ask you something….." LOL). Anyway, just thought I'd stop by & share the SITS love. I'm intrigued by your blog & will definitely be following!

    Many blessings~~~

    Crystal

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  2. Great resources and commentary. My husband and I have good friends who got amnio when expecting with the full intention of terminating the pregnancy if abnormal results were found. We couldn’t comprehend it, but other than the standard ultrasound testing, we had nothing else done. We’ve always believed that life happens. Even with a perfect infant, there’s no guarantees. It amazes me that friends can have such opposite fundamental beliefs.

    Thanks for stopping by my blog last week and congratulations to your husband!

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  3. stopping by from SITS and wishing you a great Friday!

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  4. Thank you for this great, informative post. So thought-provoking. Stopping by from your comment on my blog via SITS.

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  5. First thank you for coming by my blog and following and entering the giveaway.

    Secondly, I really enjoyed this post. It makes me think about a lot of things…I try (I will be truthful that I am sometimes influenced by one thing or another) to treat everyone like they are capable of anything…with the idea in mind that I do not technically have any disabilities but there are a whole bunch of people out there who can do so many things that I cannot not. I sure hope that came out right. I read your husbands essay, as Aspergers intrigues me…we have had my son tested and he (as the doctors say) does not have it..but still has many characteristics of it, so my understanding more of it, does help him.

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  6. Very interesting article by Harriet McBridge Johnson–I recently read her juvenile fiction book, Accidents of Nature, and really enjoyed it.

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