Daily Life with a C4/C5 Spinal Cord Injury

We are often needing to use accessible toilets, some are more accessible than others. Some businesses believe they have an accessible toilet but for users, they are often not as accessible as they could be.

A lot are built with a standard manual wheelchair in mind. What we have is, a motorised tilt in space wheelchair specially fitted to dad and his SCI. It’s longer than a standard wheelchair and a fair bit wider too.

Like many others, dad needs the assistance of a PA or carer. We are often faced with a toilet that is too small for the additional person, or where we can’t close the door as space is limited. A pub we visited last week, had several highchairs stacked up next to the entrance, making access impossible. The turning circle area was too small for us.

When changing a stoma bag, it’s also important to not only have space, privacy and dignity, but also a table or pull down bench and access to the sink and bin. When space is tight, none of this is possible.

Problems we’ve faced in the past:

Room too small for wheelchair and helper;

Unable to close door due to space;

Access route blocked;

Accessible cubicle inside the Mens & a female PA;

No shelf or bench, nowhere to put stoma care items;

Only one accessible toilet in theatres and entertainment venues; and,

Corridor too narrow to access the accessible toilet!

How Do We Manage This?

It’s not easy and nor is it very dignified, but our answer, is a milk bottle! Yes, a milk bottle! We carry an empty milk bottle with us when out of the house. This enables the catheter to be emptied as soon as it needs it. If its not emptied quickly enough, this can cause blockages, infections, unknown pain and lead to autonomic dysreflexia which is a medical emergency.

For stoma care away from the home, it’s often impossible. We’ve had to cut short an outing or have had to leave the venue to use the car door as a dignity shield and use the car seat as a bench! None of which is ideal.

In an ideal world, all hospitality venues would have a truly accessible toilet and towns and cities would have more Changing Places. Our home town has 10 Changing Places within a 7 mile radius, this includes some that are only open certain times of the day and are not easily accessed if not using the venue and require a vehicle to get there!

The sad fact is, none of the above is wrong. Building regulations give scope for varying different sizes and state that a Changing Places room only needs to be provided where capacity is more than 350.

Next time you go to a venue, have a look and see how accessible the accessible toilet is…if they have one!