Courage and Creativity
- Debs Harrison
- 22 hours ago
- 5 min read
GCA member, Joanne Callaghan is the Chair for the Disability Arts Alliance (DAA) as it is her passion to help those who find themselves in isolation and sitting in silence, struggling with a disability. She points them in the right direction to receive help and assistance. She has worked with Artshape for 23 years and is on the Board of Trustees, helping move things forward for people with both seen and unseen disabilities. Along with her own artistic practice, Joanne has become a regular of Canopy Network working with many schools and community projects.
Once able-bodied, Joanne describes what seemed like a normal day. She was digging the garden pond and came into the house. On sitting down she found herself unable to get back up, She had to be taken into hospital. After much investigation and extended periods in hospital, she was diagnosed to have multiple sclerosis (MS), a degenerative neurological condition of the central nervous system for which there are drugs to manage the symptoms but no cure. This was complicated by a lump compressing on her spinal cord causing a tethered spine. The hospital operated on the fatty lump, but the damage had already been done, effecting the function of the bladder and the bowel as well as plaques on her brain, consequently reducing her sight and therefore her ability to read or write. Her hands, arms and legs can experience involuntary movements, scrunching up (spasticity) or shaking, so the balance of her medication to try to reduce both is important.
Previously, Joanne had been quite sporty, taking part in team games and strength building. She was politically active within the unions and was not averse to public speaking. As an avid reader she consumed horror books and poems from the age of 9. Her happy place was writing short stories and poems. Due to frustration with her condition, Joanne had to find another way to express her feelings and transfer her creativity. She picked up a brush for the first time only a year into her illness and began to share her insights. It has become her reason for getting up in the morning.
With this shocking change in her life, Joanne lost her sense of individuality, identity and purpose. She felt delegated to the passenger seat where the power for all her decisions was taken out of her hands. Art has given her a way to be back in the driver’s seat and to be perceived as herself again.
Joanne can sit on a chair and appear to have no physiological issues. When people see Joanne in her wheelchair, they aren’t aware of the many complications she experiences. As with many people with disabilities – the condition is not visible. Few speak up or ask for assistance due to the embarrassment of people seeing the true extent of their pain and disability.
Even with a personal assistant (PA) to help overcome the numerous obstacles to get up in the morning, it takes at least an hour and a half to get ready, something we all take for granted. Due to her illness, a hysterectomy and secondary cancer in her bowels, she uses a bowel pump for an hour a day. So, everything takes much longer. Without a PA it would be difficult to function. Due to fatigue Joanne tries to alternate an active day with a day of rest. Joanne often relies on others to read documents as the words seem to move around the page and she can’t distinguish between shades, only seeing distinct blocks of colour. So, if she sees you and doesn’t recognise you it’s because you will be a blur of colour until she gets much closer to you.
Joanne was able to adapt her partner's childhood home (in Tibberton) to her disability; extending and transforming the whole of the downstairs and garden to make them wheelchair accessible. This includes a kitchen area in her Studio where she can now access the sink to wash her own brushes. Luckily Joanne had experience with building plans, kitchens, bathrooms etc so had a lot of input to the layout. She was assisted by her friend who trained as an architect, so saving on finances. Unlike her last house where she was stuck inside, she is now able to move around with her walker and wheelchair. The garden was previously rocks and mud but is now a lovely large area with a pond, overlooking open fields. It has become a hub for other artists regardless of their abilities. In most places that Joanne visits she finds the spaces do not accommodate disability. For example, the sinks are too low for wheelchair users or the toilet is inaccessible.
Joanne’s first few main paintings were 80cm x 110cm. Big enough to get her feelings onto the canvas. Her earlier paintings were very much like diary entries.
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One of her early paintings is called Let’s go outside. This painting expresses her feelings after having to look out of the window at the same view, for three years. It explores the barriers of going outside. In the picture there are many bolts on the door, there is an unreachable key on the floor (which unlocks the scent of the flowers), water is cascading down the stairs and at their base is a bear trap.
Another early painting is called Empty gestures. This is about people offering to help but not following through. The person on the left is bringing an empty box with the expectation of being thanked but there was really nothing to thank them for but there is the feeling of pressure to make people feel better about themselves. Instead of foliage in the tree there is a brain putting immense pressure on has branches that extend to become fingers.
Image 2: Tethered was painted before Joanne went into hospital for the operation to take the lump off her spine. She had to spend seven weeks at a time lying completely still, recovering in consecutive hospitals.
Clockwatching was created in 2009 for an exhibition in Germany. the seeds around the edge are in roman numerals, the pill isn't just the medication but Joanne being trapped by time. Most people’s lives are ruled by the clock, but when you become disabled there is no longer any sort of spontaneity, every trip, bath, visit has to be booked in advance along with someone to help.
Joanne knows she has a limited window left to paint and create new work. Therefore, she is keen for her work to be in galleries and exhibitions. Many of her larger paintings have never been shown apart from her open studios. She would like to exhibit with others who also have disabling conditions. As it takes a person with disability longer to do things or get help, meeting deadlines is an issue and opportunities can often be missed.
Joanne is promoting the idea of riders for those with a disability. In the acting world a rider would go ahead to make sure everything they need is ready before they arrive. A rider for a person with a disability would mean helping with their emails, making sure that there are facilities available at a venue and there is the access and support they need. Everything has to be planned in advance, there is no room for spontaneity.
Disability Rights Uk states, ‘The Social Model of Disability was developed by Disabled people and describes people as being disabled by barriers in society, not by our impairment or difference. If modern life was set up in a way that was accessible for Disabled people, then we would not be excluded or restricted.
The social model of disability helps us recognise barriers that make life harder for Disabled people. These barriers are identified as being the physical environment, people’s attitudes, the way people communicate, how institutions and organisations are run, and how society discriminates against those of us who are perceived as ‘different’. Removing these barriers creates equality and offers Disabled people more independence, choice, and control.
With many thanks to Joanne Callaghan.
