Job Concerns
The right job can offer you more than just money. A successful job or career can also give you a sense of self-worth. Being able to support yourself and the self-esteem that goes with that can help you gain true independence.
People with health problems often neglect planning for a career. Your state’s Department of Vocational Rehabilitation and career counseling centers can help you plan job training or a career. A local college may also offer these services. Career counseling can help you assess your interests, talents, and skills. You can learn how to write an effective resume and how to interview well.
People with bleeding disorders need jobs that will not cause frequent bruising or bleeding and that will provide good health insurance. As you set your career goals, think about your mental and physical abilities and limitations. Ask yourself what kinds of activities you enjoy and what special skills you already have. Consider whether you prefer to work with people or alone. If you are older, you may want to retrain in a new field such as Information Technology. You may be able to get a work-study grant from the government. Find a career that you truly enjoy. There are more jobs you can do than jobs that you can't.
Telling your employer about hemophilia
Perhaps you have wondered whether or not to tell a potential employer that you have a bleeding disorder. If your bleeding disorder is mild or rarely causes symptoms, there is little reason to tell. If your disorder is severe, there are good points and bad points about talking about it in an interview.
One reason to tell that you have a severe bleeding disorder is that you have a chance to teach your employer about it from the start. You can ease their worries. You can offer the facts to prove that your disorder will not affect your ability to meet the demands of the job. If you would like, someone from your HTC or local hemophilia organization can help you talk with the employer or provide written information.
Keeping your disorder a secret from your employer may cause you a great deal of stress. You may become afraid to discuss or use benefits such as workers' compensation or health and life insurance. You may worry daily about what will happen if you have bleeding while at work or how your employer will react if they find out you have a bleeding disorder. By talking about it from the start, you can form an open relationship with your employer. You both can reach an understanding about how your disorder will or will not affect your job.
You have the right to say nothing about your disorder if it will not keep you from meeting the requirements of your job. If you believe that the employer will refuse to hire you solely because you have a bleeding disorder, you may decide not to reveal that you have it. The company to which you apply may have too few employees to be governed by right-to-employment laws.
You may plan to tell the employer after you have been hired and have shown that you can handle the job. However, if you are asked directly, tell the truth about your bleeding disorder. Also, do not hide your bleeding disorder when you fill out the health insurance forms at your new job.
Whether or not you tell others, you should always wear a MedicAlert® necklace or bracelet in case of an emergency. This could save your life if you are hurt and can't talk.
The Americans with Disabilities Act
If you find the right job, having a bleeding disorder should not affect your ability to carry it out. The employer should decide to hire you based on your skills, training, and experience. The decision should not be based on your disorder. Right-to-employment laws say your record must be reviewed as if you did not have a bleeding disorder. This also applies when the employer decides whether or not to promote you.
The Americans with Disabilities Act (ADA) is a federal law that protects people with disabilities from discrimination. It applies in various settings, including employment, transportation, education, and business services. The law does not apply to employers who have fewer than 15 employees.
Part of the ADA deals with public accommodations. It applies to places such as restaurants, hotels, theaters, stores, doctors' offices, parks, schools, day care centers, and just about any other type of business that provides services to the public.
These places cannot discriminate against people with disabilities. They have to remove barriers to people in wheelchairs and to help people who are deaf or blind. They cannot refuse service to people with disabilities. Religious organizations and private clubs are exempt from these rules.
The ADA defines disability as having an impairment which substantially limits "a major life activity." The law states that a major life activity includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. Circulatory functions include the ability of blood to clot normally.
The ADA forbids discrimination against people who have a disability, have a history of a disability, or are merely "perceived" to have a disability. It also forbids discrimination against non-disabled persons who associate with someone who has a disability. For example, an employer cannot refuse to hire the spouse of a person with a bleeding disorder or someone who lives with a person with AIDS.
The definition of disabled under this law is different from that used to determine if someone is eligible to get public assistance such as Social Security. For example, if you are fired from your job simply because you have a bleeding disorder, you have been discriminated against because of a medical condition. You are covered under the ADA. It doesn't matter whether or not you have been declared "disabled" by the Social Security Administration.
Your employer can ask if you are able to perform a job. He or she cannot ask you if you have a disability or make you take tests to screen out people with disabilities. Claiming that an employee's medical condition will cost the company more in insurance premiums and refusing to employ him or her is not acceptable under the ADA.
If you feel that you have been discriminated against because you have a bleeding disorder or any other condition, you may want to file a claim with the Equal Employment Opportunities Commission (EEOC). You can file a claim by mail or in-person at your local EEOC field office. Call 1-800-669-4000 or visit www.eeoc.gov/field-office to find the closest one. A claim must be filed within 180 days of the discrimination. The EEOC is charged with investigating your claim. It may either take action against the employer or grant you a Notice of Right to Sue. You then have 90 days in which to file a lawsuit. Ask your HTC or local hemophilia organization for advice about handling discrimination complaints. Discuss your complaint with your doctor since you may need a medical expert to support your claim.
It may be helpful to talk to the employer's personnel department before you submit a formal complaint. Perhaps you can clear up misunderstandings about your bleeding disorder. You may be able to give the employer facts which will convince them to rethink your request. Keep detailed records of everything that happens between you and the employer, including names, dates, and what you are told. The law forbids employers from retaliating against anyone who files a complaint or lawsuit.
The ADA and other laws about employment are long and complex. The social worker at your HTC can serve as a resource in helping you navigate information on your rights. The federal government maintains a website with full information about the Americans with Disabilities Act: https://www.ada.gov/.