Six Rules for Living with a New Disability
Six Rules for Living with a New Disability

Categories: Community Life

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By Guest Blogger Katherine Schneider, PhD, Author and Retired Clinical Psychologist

A consultation with an elderly person going blind has made me expand my rules for assistive technology into six rules for living with a new disability. As with all rules, they are easy to give and hard to live by and, of course, there are always exceptions.

1. It costs more, takes longer and requires more planning to live with your new disability. If you need to arrange a ride to the store for grocery shopping, you may keep a running list of needs so you don’t have to ask too often. The days of a quick run to the store for an item you forgot are gone!

2. There’s a huge learning curve. You are a baby in this new life, so don’t expect the same results when you do a familiar task. Those muffins you’re used to effortlessly making may look better and take less time if you make them in a mini-loaf pan instead if your vision is failing. They’ll taste just as good!

3. Gizmos, adaptive tech gadgets, etc., are great, but will not “fix” your disability. You can use an iBill reader or an app on a smartphone to denominate your paper currency, but it’s faster to just ask someone. In 64 years, I’ve only been cheated once.

4. Some people, be they friends, family or professionals, will “get it” and be helpful; some you can coach into responding well and some you can’t. The ones who will never get it may still be wonderful friends. When they keep moving your cane without telling you, just remind yourself, “They don’t get it and I love them anyway.”

5. Go ahead and feel good and sorry for yourself. Throw a pity party. Then, when you get tired of it, get up and move on. ABAPITA is a phrase in the blindness community which means, “Ain’t blindness a pain in the anatomy?” Sometimes it truly is.

6. There are positives of having a disability, but it will take a while to find the pearls. Remember, it takes a grain of sand irritating an oyster plus a lot of calcium carbonate secretion for an oyster to make a pearl. Some of my pearls are having the company of wonderful guide dogs for 40 years, getting to know amazing people who originally reached out to help me and the funny things that happened to me because of my blindness. Find and share yours please!

Katherine Schneider, PhD, is an author and retired clinical psychologist living in Eau Claire, Wis. with her ninth seeing eye dog. She has published a memoir, To the Left of Inspiration: Adventures in Living with Disabilities, and a children’s book, Your Treasure Hunt: Disabilities and Finding Your Gold. She originated the Schneider Family Book Awards for children’s books with disability content through the American Library Association, and an award for superior journalism about disability issues through the Walter Cronkite School of Journalism at Arizona State University.

Locally, she started the Access Eau Claire fund through the Eau Claire Community Foundation to help nonprofit organizations work toward full inclusion of people with disabilities.

Her next book, Occupying Aging: Delights, Disabilities and Daily Life, will be available in the fall. Those interested can subscribe to her blog at http://kathiecomments.wordpress.com.

12 Responses to Six Rules for Living with a New Disability

  1. maria r. says:

    Its hard. Difical for me with my disabelyte ,some times i forget how to speail some times i forget were i put my keys at i get so iretaded with my self,n i takeit out on my husband or all walk out to my back yard n think befor runing away like i use to,well now i got to much to lose .my 4 sons need me.speshaly if i know that i got them to dependon n thay got me.my disableti is geting werst as i get older.n im only 27 my eyes,im loseing my vision n my arterides is geting werst my memore i dont want to talk about it.n diling with geting my ssi n my husband negatev peopel daunting my disabilities well .i hat unaffected n no help

  2. Maureen G. says:

    I have been searching for help to stay in my home and being handicap accessable,I often fall in the shower,fall down the stairs and I live alone.I offen think I will fall and will be months before someone finds me.trying to put a inlaw suite in my basement ,so I can live on one floor.in my 4 yrs of being disabled.my friends and family have been slowly dropping like flyes.now I am alone with no help and been scammed by two mortgage companies.my bank ,who I asked for months to get a paper statements.when I got mad and went to the bank.there were all these fraudulent charges.I was robbed two weeks ago and they stole my house keys.now I don’t even feel safe in my own home.they went threw my drawers while I layed there sleeping.feel so violated.this was the only place I did feel safe.this has been the longest time of my life.a single mother at 16,was the first time in my life ,that I was living alone.with my son’s grown and all moved out.I was starting a new chapter in my life.bought a harly Davidson.met some wonderful woman who rode too.and I was loving the next chapter in my life.my company took everything away from me and left me wishing I had died that day.instead of living in the most horrible pain I have ever felt in my life.it never leaves me.day and night.24 hrs a day.and they aren’t even held accountable.I worked so hard for my company and now I am a id number is all.and they do everything they can to make my figment of a life worse when ever they can.pa workforce have no rights,while my company is killing there workers and leaveing them disabled for life.can’t understand how they can be killing and maming there workers and get away with it.sick of this night mare.I call my life.

    • Corinna says:

      I read your testimony and I can relate to a lot of it. I keep getting asked “Have you ever thought of getting a job?”
      Over and over again my reply is “Of course I would get a job if they would let me work for 30 minutes and then lye down with a roll under my neck to relieve some….only a little some, I also tell them that I would need a job that on top of the above, I would also need to make approx. $3000. a month to cover my monthly medical visits and my medicines I am on now.”
      And it is family asking me. I even asked my sister why she never comes to visit when she is only 6 miles away where my step dad lives. I lost my Best Friend, My Mom this last June (and my sis visits him almost every weekend). My sister replied she wouldn’t come visit because my apt is a disaster??? I will admit a bit cluttered, because I can only do one area a day. And I asked her when the last time she had been here? She then began to get tongue tied. I’ve been here over 5 years and she has come once. If I saw my sister having the disabilities I have both physical and mental I would gladly visit a couple times a month and HELP HER.
      I could go on and on. But I certainly do understand being alone with no help and I suffer from severe depression on top of it all, and I can only let God handle it all, because I can’t. God Bless you and thanks for what you shared.

    • Corinna says:

      I had to look at the error in my typing. I meant to share that my neck was broken almost 9 nears ago and have rods, brackets, and screws….despite a bunch of other healed broken bones.
      And I meant to say I would need $3000 a week, not a month to pay for medical.
      And as far as getting help from my sister??? She apparently does not think I need help. It’s just so frustrating all the time.

  3. Barbara says:

    Thank you for your story. Living with a disability has been hard for me to accept. Gone are those days of shopping and wanting to dress in the latest fashion. Now I stride for comfort and balancing myself when doing the simplest things.

  4. Anthony C. says:

    http://socialsecuritydisabilityassist.com is a place you can go to get answers from the private sector if you are seeking disability benefits. The disabled that can not work need financial assistance and their rights protected.

  5. christine d. says:

    Thank you!

  6. steve says:

    my mother had mascular deg. diease. the fast kind. then a while later she was diagnosed with lung cancer she refused treatment saying she would wather die than be blind. she only lasted a few months.

    • Carol says:

      Giving up and depression can make the end come more quickly. My mother-in-law seemed to choose death when faced with trauma beyond her coping skills. Losing her left a huge void in our lives. I am sorry that it seems that your mother did not have the supports and mental health care that could have helped her savor her remaining gifts.

  7. Debra H. says:

    I hope Katherine Schneider books are not just in braille. I found this to be very inspiring with my disabilities and hope to read more of her writings to absorb and to share with others that are in my disability group. I know that some need to hear this as much or more than I do.
    Thank you, Dr Katherine Schneider.

  8. Angel L. says:

    i live with so many disabilitys i dont know sometimes if im coming or going,i am trying to move out of nyc with my partner(he’s partially disabled)to depew ny where my med needs will be better taken care of,cost of living is great,i cannot find help for a loan though,very troubling can anyone help