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Trish Dainton Jul 2015
The progression of Huntington's disease often leads to the need of a wheelchair. My husband resisted using a wheelchair for many years, even though his poor balance and tiredness meant he was prone to falls. I didn't exactly pressurise him into using one. To be honest it was not just because it was another sign of loss of independence, but it would have been harder for me too in many respects.

What I wasn't prepared for, when the time came, was the social stigma attached to wheelchair users insofar as becoming a kind of non-entity! In a weekly blog I wrote in 2008 I wrote about the first time I took my husband out in a wheelchair. It angered me how peoples’ attitudes seemed to change overnight.

Walking down the High Street,
Hand in hand like lovers,
The couple blend into the crowd,
No different from the others.

As the years go by though,
His body having changed,
Has sadly meant a wheelchair,
Has had to be arranged.

Strolling down same High Street,
The woman now behind,
Her lover needing pushing,
Steep pavements so unkind.

Entering the bar now,
With awkward navigation;
People jump to open door,
Aware of situation.

“Thank you” says the man in chair,
When wheeled into the place;
“Welcome” say the helpers there,
But all avoid his face.

Carer gets the “Welcome” mouthed,
No looks with him they share;
Let’s treat this fellow human being,
As if he wasn't there.
Taken from the book 'Curse in Verse and Much More Worse. Written by me after the death of my husband - Steve - to Huntington's disease.

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