Role Activities
Role activities help to define who we are and represent the different roles that we play. We are not only students, business people, lawyers, store clerks, mothers, fathers, children, aunts, cousins but also combinations of many different roles. These roles are important because they are part of our make up and provide us with responsibilities, goals, money, joy, stress and much more. It is important for people with epilepsy to ensure that they think of themselves as more than just "a person with epilepsy". This disorder is only one facet of their life.
Employment
FACT: The Ontario Human Rights Code and the Employment Equity Act protect differently-abled people from discrimination with respect to recruitment, hiring, retention, treatment and promotion. All people, including persons with epilepsy, are entitled to a workplace free from barriers, both systemic and deliberate, which discriminate against them.
Researchers have found that many people with epilepsy have feelings of dissatisfaction in the area of employment. This is important as higher levels of income have been found to be associated with better health while low income earners have increased rates of disability and health related problems. Unemployment is linked to difficult living conditions, low income, loss of self esteem and higher rates of ill health. Therefore it is important for people with epilepsy to find suitable jobs which can provide them with an income, increased self esteem, as well as a number of essential skills.
Disclosure
The question of when to disclose epilepsy to an employer can cause an employee a great deal of anxiety. Before disclosing any information, an employee must have extensive knowledge about their particular type of seizure disorder, the characteristics of their seizures, how frequently they occur, first aid procedures if required and the length of recovery time following a seizure. This information will help the employer better understand epilepsy and make any accommodations if required.
FACT: Approximately 50% of people who have epilepsy experience difficulty finding and keeping a job.
Job Suitability
Strategies to assess the suitability of the candidate for a particular job are necessary. Assessment trees may be used by both physicians and individuals with epilepsy themselves, to assess job suitability. Assessment trees may include some of the following questions and criteria.
Job Suitability Considerations
- Does the individual take antiepileptic drugs?
- When did the latest seizure occur (with or without medication)?
- If the epilepsy is still active, what is the form of epilepsy and the seizure type (description of seizures, frequency, severity)?
- What time do the seizures usually occur?
- Are there possible provocative factors (lack of sleep, use of alcohol)?
- Is there secondary pathology (injuries as a consequence of seizures)?
- What are the possible side-effects of the individual's medication?
When the response to the first question is negative and the person has been seizure free for over a year, there are no anticipated problems for the work situation. In most situations it is common to stop medication when a person has been seizure-free for three to five years. If freedom from seizures continues, no problems need be expected.
FACT: In Ontario, it is illegal for an employer to ask questions about medical problems on an application form. Medical questions during an interview must be restricted to inquiries that will determine if reasonable accommodation will be necessary.
Accommodation
Accommodation for people with epilepsy may be necessary in the workplace, to enable the person to perform their job. Accommodations are determined by doing physical and demand analysis, or a breakdown of the exact physical requirements necessary to perform a job. For example, the following accommodations may be necessary:
- If an individual has a type of seizure which is triggered by flashing lights and the essential duty of the job is to work on a video display terminal, altering or deleting the flashing cursor from the monitor may be necessary.
- If the employee has nocturnal seizures, the employer should accommodate the employee by assigning day shifts.
- Following a seizure, the employee may need to rest for a period of time (a few minutes or an hour or more). The employer should not insist that an employee go home; s/he is not sick and will resume working as soon as possible.
Education
Learning is an essential part of our lives. From before the time that children first enter school, they must have the opportunity to develop the skills that they will require for life. By being aware of the issues that face children with epilepsy, you can ensure that your child has the best opportunity for growth and development. People with epilepsy can pursue advanced education and attain rewarding jobs. Learning is an ongoing process and continues throughout our lifetime. Going back to school as an adult to upgrade your skills can be very rewarding.
Epilepsy is not and should not be held as a barrier to education.
Most children with epilepsy do well in school and do not have learning problems. However, parents should be aware that children with epilepsy are more likely to have problems in school. If a child with epilepsy is having trouble in school, there are many factors other than the seizures themselves which may be contributing to the problem.
Factors to Consider
- frequency of child's seizures
- child's attitude towards school
- child's intellectual abiltiy
- child's self-esteem
- side effects of child's medication (hyperactive behaviour or lethargy)
- teacher's attitude towards and knowledge of epilepsy
- attitude of other students toward the child with epilepsy
- other disabilities
It is important for parents to keep teachers informed of any changes that may affect their child's seizures, and to inform teachers of safety and first aid procedures necessary for dealing with seizures. A teacher who understands the child's seizure disorder and who is able to react appropriately (administer first aid, calm other children) to a seizure will feel less anxious and more confident if the child has a seizure.
It is very important for children with epilepsy to engage in many of the same types of activities in which they would have been involved if they did not have a seizure disorder. By not motivating or encouraging one's child to complete homework or engage in extra curricular activities for fear that they may have a seizure, parents may jeopardize their child's educational and social development. Teachers and parents may have lowered expectations for children with epilepsy due to their own misunderstandings or fears of the disorder. Possible consequences of this may include: lack of motivation by the child, decreased interest by the child, the child's lowered self-esteem or lack of competitiveness.
Women's Roles
In the past, marriage and childrearing were seen as inappropriate activities for women with epilepsy. These unfortunate and misguided attitudes were often based on the mistaken idea that epilepsy was always inherited, or that the behaviour of people with epilepsy was unpredictable, hence unsuitable for childrearing.
This is untrue. More than 90% of women with epilepsy have normal, healthy babies. Most women with epilepsy lead healthy, active lives.
Unfortunately, negative attitudes and stigma towards women with epilepsy still prevail and last from puberty to old age.
- Marriage rates for women with epilepsy are lower than for men with epilepsy.
- Many women with epilepsy are subjected to abuse and violence in every manner (sexual, emotional, physical, financial, social).
This can affect a woman's well-being. A woman living with epilepsy can increase her well-being and decrease the stigma associated with the disorder by taking an active role in educating herself and others about the type(s) of seizure(s) she experiences.
