disability perspective / MS

Q ...What is a disability perspective?

A ... disability perspective is a viewpoint that considers the needsand aspirations of disabled people and their families.

I offer as an example a tale of two stories...

“Christmas By The Lake” Boiling Springs, PA

When surreal becomes real, you’re just glad you were part ofit.  “Christmas by the Lake” hosted bythe Boiling Springs High School Alumni Association could not have been a moreenjoyable winter outing.

Upon arriving we found wheelchair van accessible parking availablein front of Appalachian Trail Conservancy.

Lowering our van ramp we found ourselves also in the staging areaof the Pioneer Girls (a variation of Girl Scout Daisies) and parents. Our‘transformer’ van quickly became show and tell to young inquiry minds who inturn shared with us all their exciting adventures lighting the luminaires. Welaughed and smiled as the curious ‘heart of childhood’ embraced differences sohonestly and innocently.

Our push and roll around the lake was mesmerizing with hundreds ofreal luminaries plus a fully lit Christmas Tree floating in the lake. Patti inher wool cape, mittens, hat and buggy bag wheelchair lap blanket declared shewas “quite toasty” in spite of a ‘real feel of 29˚F (-1.6˚C)’.

When we needed to abandon the path and use the side of the streetfor a block, the reflective strip on Patti wheelchair lap blanket shone like abeacon in the lights of approaching cars.

Christmas music filled the air, Santa roamed about ho ho hoing and chestnutsand marshmallows were available for roasting over a fire pit.  Everything was free including hot chocolate,hot dogs, and Christmas cookies. MS symptoms of dysphagia restricted us to hotchocolate and cookies but that was ‘no problemo’, they were delicious.

Horse drawn carriage rides were also available but we did notexplore as rarely are they easily accessible and Patti could care less - shealready has me, her trusty one-man open sleigh horse.
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Now the same event as reported by mainstream media … Lights line the lake in annual Boiling Springs event
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12% of Americans are affected by disability, add in theircaregivers and families and you are talking about a quarter to a third of anycommunity’s population.

Including disability perspective into news or promotions is notabout political correctness, it is inclusive and welcoming to people of allabilities.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

winter wheelchair tips for caregivers 2011

In a wheelchair Patti does not generate thesame body heat as a walking person. Cognitive impairment only adds to risk whenoutdoors in any weather.

Speculating on how fast it takes forhypothermia to set in is a fools’ question. … Prepare!

While winter embraces all, it does demandcaregiver / carer respect. Our story is about Multiple Sclerosis however winterweather does not discriminate over diagnosis.

Lower body for a non-ambulatory person is mostvulnerable. Last winter was a benchmark when we received a gift of a buggy bag® wheelchair lap blanket. All the time and stuff involved such as layers ofsocks, leg warmers, boots, and blankets disappeared. It’s almost like the BC /AD line in our history of winter living with MS. Not only did it quickly becomea winter mainstay but its all-weather features have made it all year rain gear.

It’s easy to say “wear several layers ofloose-fitting clothing”. However when someone is unable to dress themselvesthis can get beyond interesting. A sense of humor is most helpful. 

For outerwear we depend upon a hooded woolzippered cape. Capes are easier for getting on and off when assisting someonein a wheelchair and a zippered cape simply increases options. Hoods are easy toflip up or down, cover everything except the face and are always attached.While wool is ‘old school’ it still has the unique ability to provide warmtheven when it is wet.

While a hat and scarf are often recommended Ihave concerns about mixing scarves and wheelchairs, though I have learned ofthe ‘infinity scarf’ for those wanting style without the ends that could catchin wheels. Hats work OK but are easily misplaced and can create some serious ‘electrichair’ styles.

Mittens ‘rock’! Rather than struggle to fit herfingers into gloves Patti just slides her hands into warmth.

Most importantly remember your carer /caregiver self especially your foot wear on snow or ice-covered sidewalks, ramps,driveways, etc. Fashion is arbitrary, falling is unacceptable.

Being prepared separates ‘disability forced hibernation’from enjoying winter to its fullest!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer