If Only You Knew



I have a disability and a twisted sense of humour – and I’m living my life the way I can with Cerebral Palsy and severe deafness!

I am selling this fabulous feel-good book, a wake-up call with a ‘wow’ factor, on my own.

It’s funny and real and with no self-pity at all!

If you are interested in buying this 97-page book, including four pages of photos, please click ‘add to cart’ here and follow the way! 🙂

Reviewed by Prof Brian Matthews

This book is written by Jacy, a woman with a disability, about the first 20 years of her life. It has 93 pages and 19 chapters and many photos of Jacy at different points in her life.

The author has cerebral palsy and very little effective hearing. Her book outlines her personal experiences with chapter titles that highlight major experiences in her life. In the Foreword she signals for the reader the types of difficulties she faces in relation to her disability but also stresses her positive and fiercely independent approach to life. In Chapter 1, From the Moment I knew, Jacy relates some of her early history as told to her by her parents and stresses the importance of the support of her family network and their rejection of the deficit-based philosophies of the time. Jacy just “accepted the way I am” and with the love and support of her family and a high degree of self acknowledged stubborness she learned to ride a three wheeler bike and overcame the difficulties she had with fine-motor tasks such as dressing “by doing things my way with my hands”. The picture this chapter (and subsequent chapters) paints is of a person who is highly motivated to succeed and who abhors the ‘learned helplessness’ that becomes a part of the lives of so many people who have severe disabilities.

In Chapters 2 and 3 she relates important events that occurred during her early schooling and on family holidays. Jacy relates her experiences in kindergarten in Broken Hill and how she “used to love it”  and was “treated as just one of the kids”. But she also relates the sadness about leaving her family and going to Adelaide for specialist schooling, though in the style that becomes evident throughout the book, she relates  the positives about friendships and her heartache over leaving her family when she went home for regular v isits. She returned to Broken Hill for her schooling but her mother refused to place her in a Special School and the Education Department accepted her in a mainstream school which she then attended for her primary school education – “I felt that I was in the real world for the first time.” Jacy relates her difficulties with writing but mainly focusses on the fun she had and the mischief that she and her friends got into.

In Chapter 4 Jacy describes the fun she had on a school camp in Year 5, a ‘trike’ she received for her birthday present and her joy in the mobility this gave her, as well as an extended family trip to the Northern Territory, Queensland, and on to Sydney before returning home. She describes the boost in confidence these experiences gave her – “I was a very happy person, full of self-confidence and ready to tackle anything that came along”. Chapter 5 describes her early experiences at High School, praising the acceptance and encouragement of most of the children but expresses disappointment in the reactions of the teachers “Looking at me as if I was something that had dropped out of a tree”.

Chapter 6 relates some of the more difficult experiences at school as well as the hurtful language used by some of the children but is full of more of her mischief which makes for humorous reading and stresses her outgoing personality . Chapter 7 provides highlights of a family trip to Surfers Paradise and Fraser Island in Queensland, somewhat marred by her first menstrual period, but Jacy just took it in her stride with the resilience that weaves its thread throughout her writing. In Chapter 8 she describes difficulties she experienced in school due to her severe hearing impairment, hearing aid ‘glitches’, the teasing of some students, and the negative and positive teaching practices she experienced. She finishes the chapter with some reflections on her frustrations with the effects of her disability on her actions and how different this makes her look and concludes with “just a little wish that people like me will, one day, be fully accepted as human beings; not seen as freaks by the rest of the community”.

In Chapter 9 Jacy provides humorous tales about another extended family holiday involving crocodiles, catching a barramundi, the story of the ‘dunny chair’ , and climbing Ayers Rock (again) but returns to relaying tales of school in Chapter 10 (Year 9 now) as well as her out of school activities (she loved ‘Blue Light’ Discos, sleep-overs, swimming with her friends in her pool, and the early computer games).  In this chapter she describes the challenges of going to the school canteen as well as the difficulties that changing clothes at school for PE entailed and how she got around this. There is one tale of a boy who was very rude to her and many stories about her naughty behaviour in school as well as the story of the TV the family bought with subtitles (only worked with the ABC for a long time).  Typically, the chapter concludes with a description of another family holiday, this time involving snow, and the fun she and her family had.

Chapter 11 relates Jacy’s last year at High School (Year 10) and tells of a midyear exam where she was given no extra time to write the answers. Fortunately, the teacher who had provided her with support during her school years was able to negotiate special arrangements for the end of year exam that made this a much better experience for her, though it was not without some challenges. More tales of school trips and family holidays follow with many amusing anecdotes and the chapter concludes with praise for her ‘Special’ teacher and her trepidation at moving on from school into adult life.

In Chapter 12 Jacy talks of her therapies over the year and her experiences both positive and negative in Brownies and then Girl Guides. This is a critical chapter for therapists to read – “My message to those who have the power to tell us disabled people what to do, and when, is: ‘Give us a break’ “. Jacy argues with passion that therapists need to remember the individuality of their clients and avoid a ‘one size fits all’ approach to treatment and activities.

Chapter 13 starts by relating challenges she faced in adult education courses (TAFE) but she persisted and felt that she approached these studies in a much more mature way than she had at school. As in earlier chapters, she relates her frustrations with literacy due to her hearing impairment, and then segues into another family trip that involved the theft of their vehicle and other interesting experiences. The chapter ends with Jacy describing her hurt and depressed feelings on seeing a video from the trip that highlighted to her how obvious her disability was but also outlines how she resolved these feelings “I soon realized that ‘normal’ was a state of mind and getting mad wasn’t going to help, was it?”.

Chapter 14 explains how Jacy got her first car and learnt to drive, and describes her early work experiences and Chapter 15 tells the story of how she got assistance to develop her reading skills and continues the story of  her work training placements and concludes with her first experience of alcohol on her 18th birthday. Chapter 16 describes her trip to Canberra for a conference about people with disabilities and the difficulties she had on the plane trip, in locating her hotel room, and her hunger and thirst at the conference because there were no foods and drinks she could easily access. But Jacy made the most of it,  made a number of friends and, clearly, grew from the experience “For me, it was also a turning point in my life; I was a changed person…”. But her eligibility for work training had expired and she found herself unemployed but was excited that she was now able to receive a disability pension and she discusses the importance of having her “own money” and the implications for her independence.

Chapters 17 and 18 cover Jacy’s move to Adelaide and the computer training she undertook. She was amazed by the unfriendly behaviour of city dwellers compared to the more supportive approach in her former regional setting. She was supported well in her computer training experience, though, and relates clearly some of her experiences during this time.

Chapter 19, the final chapter, lets the reader know that Jacy did get a job and talks briefly of her plans at the age of 20 and how many of these she has achieved, as well as describing some of the activities with which she was involved with others with disabilities. There are powerful messages in this chapter about the importance of independence and choice as well as reminders for care-workers and volunteers about engaging with people with disabilities in a respectful manner. All this is done, of course, with humour and clear expressions of determination and a desire for acceptance of her differences by members of the community.

Overall, this book is an easy read that is both interesting and humorous. I recommend it to everyone but particularly those who work or are training to work in supporting people with disabilities. When you have met one person with a disability, you have met ONE person with a disability. Each person is different and unique and Jacy’s book presents the character and experiences of a person with determination who is not about to let a few (major) obstacles get in her way. And she does it with so much humour and authenticity. Finally, the clear style of the book makes this very accessible for a wide range of ages and reading ability, an issue that is very near to Jacy’s heart with her early struggles to develop her literacy skills – I think you can cross that one off your list Jacy!

Dr Brian Matthews, Senior Lecturer (Retired)

Disability & Community Inclusion Unit, Flinders University

April 2013