Dealing with Disabilities

“Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true – having a disability doesn’t stop me from doing anything.” Benjamin Snow, director of the award-winning short film, Thumbs Down to Pity.

Some of the best ideas come to me when I’m in the shower. Maybe it’s because the water washes away the tensions of the day, allowing me to think random thoughts. This morning, my mind wandered back to my school days. I loved learning (with the exception of any subject remotely related to math) and worked hard to earn excellent grades. I was a model student, however, other kids taunted and teased me. Due to cerebral palsy (CP), I walked with what many describe as a limp. The type of CP I have is called spastic diplegia, which means only the lower extremities are affected. At five years old, I had orthopedic surgery (Achilles tendon lengthening), which enabled me to walk. I am fully ambulatory.

It’s fair to say that dealing with a disability is not easy. In addition to living with CP, I am also a caregiver for my mom who has Alzheimer’s Disease, which is definitely disabling. I’ve been spending the past week taking care of Mom. What is even more disturbing than her disease? The insensitive, stupid remarks made by friends and neighbors. Here are a few examples:

Mom (to a friend) – “They say I have Alzheimer’s.”
Friend (to Mom) – “That’s not good.”

Mom (to me) – “Tell her what I have.”
Me (to a neighbor, somewhat reluctantly) – “She has Alzheimer’s.”
Neighbor #1 (to Mom) – “You don’t look like it.”
Neighbor #2 (to neighbor #1) – “It’s in the early stages.” Pure speculation.

Mom (to a friend who used to be a nun) – “I’m never alone. My kids take turns staying with me.”
Friend – “It would be better if you were in a nursing home.” This woman
continued with this train of thought, even after my mom said, “Oh, no, I don’t want to go to a home.”

Excuse me? When did it become acceptable to say these things to an Alzheimer’s patient? I firmly believe that perhaps people would not say these things if Mom had a different disability/disease OR they actually knew anything about Alzheimer’s and how to deal with people who have it. The Disability is Natural homepage, created by Kathie Snow (Benjamin’s mom), asks: “Isn’t it time for some common sense, new ways of thinking, and good news about disability issues?”

About these ads

24 Comments (+add yours?)

  1. bareyournaketruth
    Aug 09, 2012 @ 01:58:12

    I wanted to include a quote by someone who has cerebral palsy in this article. The one I ultimately chose is by Benjamin Snow. I stumbled upon the quote, looked him up and was blown away…he’s amazing! Please click on the links in the article to learn about him and watch his short film, which was judged by George Clooney and other names you’ll recognize. Benjamin also volunteered for and met then Senator, now President Barack Obama’s, campaign. So cool! I’m so delighted that my morning shower led me to a new connection with Benjamin and his mom, Kathie.

    Reply

  2. JoAnn Briscese Fortunato
    Aug 09, 2012 @ 04:56:55

    It is not acceptable to say those things to a Alzheimer’s. patient or anyone with a disability. My daughter Carrie has cerebral palsy, spastic quadraplegia (all 4 extremities – severe). I have also been asked why isn’t she in a “home” ( a nice way of saying institution ) since she was a young age, she is now 23 yrs old. It can be frustrating to hear things like that especially when it’s said in front of her. She is physically disabled but her mind is normal . It is frustrating & as her mom it makes me furious. Great blog post and Carrie and I vote for you everyday!

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 08:03:42

      Hi JoAnn,

      It amazes me that people would ask you why Carrie isn’t in a “home” – and, do so right in front of her! I realize people are curious, but that does not make it okay. I was so furious overhearing the conversation my mom had with her friend (the one who told her she should go to a “home”); I wanted to grab the phone and say, “What ARE you thinking?” The question I often get about Mom is: “Does she know who you are?” People are so misinformed that they think Alzheimer’s has ONE stage (the patient can’t recognize anyone) and everyone who has it is in this stage. I’ll admit to asking this of other people (usually those I know) who’s loved one have the disease after talking and getting to know more about their respective situation. Carrie is lucky to have you as her mom. Thank you both for voting for me every day here:

      Reply

  3. RAAckerman@Cerebrations.biz
    Aug 09, 2012 @ 08:55:35

    Ah, Nicole, the issue is that common sense is a most uncommon trait…

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 11:36:04

      Hi Roy,

      You hit the nail on the head! Common sense is a most uncommon trait – unfortunately. Has someone ever used uncommon sense with you? How did you respond? Inquiring minds want to know! :-)

      Reply

  4. readinpleasure
    Aug 09, 2012 @ 10:53:47

    Nicole, try and ingnore such comments as best as you can, lol!

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 11:28:20

      I’m not sure if I want to ignore them anymore.. I did comment back to my mom’s neighbor because all three instances I spoke about in my article happened within the last two days!

      Reply

  5. Lisa Kanarek (@WorkingNaked)
    Aug 09, 2012 @ 14:55:43

    It is amazing what people will say, especially people you may consider a friend. That shows a lack of respect and good manners on their part. You have every right to speak up and let anyone who says something offensive know they are out of line. I used to be someone who ignored comments and kept everything inside. No more. I am respectful to others, but if someone does not show me the same courtesy, I let him or her know that they have offended me or someone I know.

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 19:54:07

      Hi Lisa,

      Thanks for visiting my blog and joining this discussion. I, like you, used to ignore offensive comments; particularly ones made my family members (these are still hard for me to deal with). What do you say to people when they offend you? What I find challenging is how to respond to people in front of my mom. Yesterday, I did tell her neighbor that people say things when they don’t know much about it (AD) and she agreed. Honestly, it’s challenging either way – if people comment to me or in front of mom. How does one respond to such ignorance? People aren’t trying to be insensitive; I think they just don’t know better.

      Reply

  6. lisamarieselow
    Aug 09, 2012 @ 16:38:52

    The dis-eases are just labels. I don’t think of dis-ease as dis-ease either. It’s a challenge, yes, but it’s not the whole person’s identity. They are much more than their so-called disability. Everyone has a challenge they are working on in their life with their body. I know some have it more than others. Yet, sometimes, outsiders are so inconsiderate and don’t know how to bolster someone in those situations. Sending love to you and mom. Nicole, you’re a gentle spirit, but you walk your talk and truth with such love.

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 20:07:44

      Dear Lisa,

      Thank you for sending love to me and my mom. We send love right back to you! You are right about people being so much more than their disabilities, which we all have, in some form or another. What advice to you give your clients regarding how to deal with inconsiderate comments?

      Reply

      • Lisa Marie Selow
        Aug 10, 2012 @ 09:41:06

        Regarding advice to clients on how to deal with an inconsiderate comment, it varies according to the situation. I like to respond unemotionally, but put it back on the person that it’s THEIR reality, to rude comments. I’ll use your situation: “Thank you for sharing. This is my family situation, however and we are the best authority about how to handle things.” :)

      • bareyournaketruth
        Aug 10, 2012 @ 16:25:15

        Hi Lisa,

        Thanks for sharing how you advise clients to deal with inconsiderate comments. I like the answer you suggested for my situation; I’d actually like to use it on *other* family members.

  7. Ann Mullen
    Aug 09, 2012 @ 17:33:24

    To you, Nicole and to JoAn,n I have to wonder what those ignorant people think you and your loved ones live in–a tent, maybe a cave or perhaps the barn those people were born in. Sorry. The more I write about Alzheimer’s disease and the many, many wonderful “special” children I substitute taught, the more I am amazed at the insensitivity of people.

    Reply

    • bareyournaketruth
      Aug 09, 2012 @ 20:10:25

      Hi Ann,

      Yes, that must be it – we live in a cave! Thank you for making me laugh! Did you witness insensitivity when you were a substitute teacher and/or now related to Alzheimer’s? What did you do?

      Reply

  8. Kathie Snow
    Aug 10, 2012 @ 08:57:29

    Appreciate your sharing your wisdom and experiences, Nicole, and thanks so much for including Benjamin and me on your site–appreciate it! Regarding comments made to/about your Mom–we’ve found the best way to handle these things is to use humor! Throughout Benjamin’s life, we’ve had many similar experiences to the one you described: perfect strangers hugging him, giving us money, praying for him, and asking the weirdest (to us) questions. It seems to me that when we feel powerless, frustrated, angry, etc. in these situations, humor is restorative AND it “teaches” in a gentle fashion. Here’s a short article on the subject: http://www.disabilityisnatural.com/images/PDF/humor.pdf.

    Keep on keeping on, Nicole–you’re making such a difference!

    Reply

    • bareyournaketruth
      Aug 10, 2012 @ 16:41:41

      Hi Kathie,

      You and Benjamin are most welcome! I am so thrilled to know you both! Thank you for sharing your article “Humor to the Rescue. What Do You Say When…?” with us. I have said “Why do you ask?” to nosy people in the past. It seems to catch them off guard, but there will always be those who think they have a right to answers. Today, my brother told me about a conversation with a customer about how he wished the baseball season was still in effect when he comes to FL in January (they both love the Red Sox) to take care of Mom. The customer said “You can just play the same game over and over; she’ll never know.” My brother said “Actually, she will.” Another customer made an equally offensive remark on a different occasion; to it, my brother replied – “I can’t believe you just said that to me.”

      What did you do when perfect strangers tried to give Benjamin money? Wow, I bet that was uncomfortable when it first started happening!

      I posted about you and Disability is Natural on Facebook and Twitter, but I couldn’t find you on either site, so here it is:

      “THANK YOU, Kathie Snow & Disability is Natural, for including me on your “Websites of Interest” page. I am honored! http://www.disabilityisnatural.com/resources/websites” Thanks, also for voting for me in the contest. I’ve dropped to 6th place…

      Reply

  9. Marcia Punko
    Aug 15, 2012 @ 20:32:03

    I also have Spastic Diplegia. Thanks for this blog Nicole. God Bless you in all you do!!!

    Reply

    • bareyournaketruth
      Aug 15, 2012 @ 20:38:52

      Hi Marcia,

      God Bless you! Wow, I don’t think I knew you had Spastic Diplegia, too. Thanks for commenting on this article. How do you deal with comments (to you) made by others?

      Reply

  10. Tia
    Aug 19, 2012 @ 14:18:38

    Great Blog! I have a lot to learn from you. Subscribed today, I hope we can keep in touch

    Reply

    • bareyournaketruth
      Aug 19, 2012 @ 14:35:08

      Thank you for subscribing to my blog! I sent you an e-mail today. I visited your blog earlier and liked your Facebook page. We will definitely keep in touch. I have a lot to learn from you! :-)

      Reply

  11. Trackback: World Cerebral Palsy Day « bareyournakedtruth
  12. Trackback: My We Blog Stalk Feature « bareyournakedtruth
  13. Trackback: We Blog Stalk : Nicole Luongo | FreeZa

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

The Blog Farm
%d bloggers like this: