Living with CP

Disability and Handicap 

A person with cerebral palsy has to cope with disabilities and handicaps. A disability is a physical loss of function such as being unable to walk, having difficulty with hand control or speech. A handicap is the degree to which that disability puts you at a disadvantage in daily life. For instance, someone who is very short-sighted may be considered to have a disability, but she is unlikely to consider this a handicap if she has corrective lenses. A disability may prevent someone with CP from climbing stairs, but this will only be a handicap if the building she wants to enter is not wheelchair accessible. 

CP is not a life-threatening condition and, in itself, is no barrier to leading a long and productive life. People with CP enjoy satisfying careers, university education, social life, and become parents. Some limitations are unavoidable, but very few people manage to achieve their dreams of becoming olympic athletes, concert pianists or brain surgeons. 

Some key elements to minimizing the handicapping effects of cerebral palsy are: 

(1) Attitudes: It is very hurtful to have someone pat you on the head if you are sitting in a wheelchair, or to walk away because they cannot understand what you are trying to say to them. Prejudice and teasing can be very damaging. A good sense of self-esteem is required to cope with these negative attitudes. Children can also be handicapped if they are over-protected and become too dependent. People with disabilities are people first and should never be described by negative labels like "wheelchair-bound", "spastic", or "afflicted with cerebral palsy". All people share similar needs, desires, and responsibilities. 

(2) Access: You cannot lead an independent life if public buildings, washrooms and transportation are not accessible. To have a good career you need educational opportunities. To have a satisfying social life you need access to recreational facilities and opportunities to develop friendships. 

(3) Maintaining Physical Health: A lifestyle that involves regular exercise and proper nutrition is important for everyone, including those with disabilities. A good general fitness level will help with range of motion and flexibility, and exercise to improve cardiovascular fitness can improve endurance and help offset age-related changes that lead to fatigue. A nutritious, high-fibre, low-fat diet will help avoid problems with constipation and weight gain and will increase energy levels. Having cerebral palsy does not make you immune to other conditions. People with CP are as likely as anyone else to contract heart disease, cancer or diabetes. Sometimes a change in the body can be put down to an effect of CP when it is actually a different condition. 

(4) Aging and Cerebral Palsy: Most treatment and research programs concern children with CP and little research has so far been done on aging with a disability. CP affects individuals in different ways and it is hard to generalize about the effects of aging. Although people with cerebral palsy are considered to have a normal life span, the physical challenges of CP may intensify with age (such as increased spasticity, fatigue, loss of strength and declining mobility), and these physical challenges can in turn lead to increased stress and anxiety. Adults with cerebral palsy may consider a number of strategies to cope with the effects of aging. 

(5) Maintaining Mental Health: The importance of learning skills to increase independence and self-confidence throughout an individual's lifetime cannot be over-emphasized. The stresses associated with aging will be lessened if a person is able to maintain a positive personal attitude, if they are involved in meaningful activities, and if they have developed a supportive environment. They need confidence to seek information, to plan for age-related changes, and to be an active participant in their health care and lifestyle choices.