Living with a Disability  

To be honest, like many people, I never paid much attention to people living with a disability until it hit home for me.  Even when I woke up in the hospital and was paralyzed from the breast to my feet, it still never hit me what life was going to be like going forward.  I still don’t think it hit me until I was at Providence Health Care for spinal cord rehabilitation.  It was there, meeting and talking to other patients that I realized the wide range of disabilities there were and even two people with a similar disability were completely different.

At PHC the therapists helped me adapt to my new life day by day.  Each day I learned something new that I could do that I couldn’t do the day before and I also learned my limitations.  It was a very invigorating, yet humbling experience.

I would have to personally define a disability as anything that stood in the way of a person being able to function normally.  With that, one has to define what normal is.  For normal is different for absolutely everybody.  A disability can be physical, mental, emotional or any combination of those elements.  A disability can mean the loss of a limb, a spinal cord injury, a joint replacement, a severe broken bone(s) that requires metal bracing, or a head injury.  A disability can also be the result of simply aging and everything that goes with aging.

For the purpose of this website, I am going to keep this page as general as possible with links to as many sources as I can supply for you.  So let’s get into it!

“Wikipedia describes a disability as the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society.  Disabilities may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors.  Disabilities can be present from birth or can be acquired during a person's lifetime. Historically, disabilities have only been recognized based on a narrow set of criteria—however, disabilities are not binary and can be present in unique characteristics depending on the individual.  A disability may be readily visible, or invisible in nature.

The United Nations Convention on the Rights of Persons with Disabilities defines a disability as including: long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder [a person's] full and effective participation in society on an equal basis with others.”

Things to help you live with your disability.

Take it slow

Learn to live in the moment.  Pay attention to what is needed in the present moment. Focus on the present and move on into your next steps at a pace that works for you.

Ask questions

What was your diagnosis?  What was the prognosis? How will it affect you long term?  What are the risks?  What precautions should you take? What can you do to help yourself? Ask all the questions that pop into your head and make notes—or ask a loved one so you can focus on the conversation with your medical professional.  Know that you may not get answers right away, as your situation may evolve over time.

Create a journal

If you have never kept a journal before, this is a good time to learn how to journal.  There are many tips on the internet or you can visit your local library for help.  In your journal you get to share your deepest thoughts, feelings and emotions on a piece of paper.  Here you can ask the questions that need to be asked that you might be afraid to ask.  Here you can express your disappointments with the medical institutes or how a certain person or event affected you in some way.  You can read back into your journal entries and see how you have progressed.  Journaling is an extremely healthy exercise in getting to know yourself better.

Become a self-advocate

No one knows you better than you.  Learn how to express your concerns. Learn how to direct others to help you.   Express what it is you need to feel safe and comfortable in certain situations.  This might be considered learning how to step outside of your comfort zone to express yourself.

Set boundaries

People you know and love all have the best intentions, especially after learning about your disability; however, their attentions and concerns may not be exactly what you need.  Their attentions could be very overwhelming at times.  It is okay to let them know that you need time to yourself.  It is okay to turn visitors away.  It is okay to keep visits brief.  It is okay to say no.  It is also okay to express to them exactly what it is you need from them and when.  Learn how to put yourself first; it is paramount for your healing, recovery and rehabilitation.

Focus on your abilities

Regardless of what anyone tells you; in the end, you are the one that truly knows what you are capable of.  When you have a disability, it becomes cloudy as to exactly what those capabilities may be.  You have lost your old normal and you are in the process of defining your new normal and that new normal is going to change constantly as you move forward in your life.  Reflect on what you still can do, whether you need help or you can do things independently.  Take stock of your capabilities.  Your disability does not define you.  You are still you.

Create realistic goals

After your diagnosis and you know your limitations; it is a good time to start setting goals for yourself moving forward.  Be realistic with your goals.  Don’t set the bar too high that you can’t succeed.  Failure will only cause you anguish.  Set goals that are achievable and constantly re-evaluate.  Use those goals as a guidepost to help you evaluate where you are on your healing journey.  Make sure that you put these goals in your journal and refer to them often.

Manage your expectations

It is important to check with your health care providers to know and understand your limitations.  Setting expectations that are too high or unachievable will only cause you to have mental and emotional issues.  There is nothing worse than disappointment.  Disappointment can lead to depression.

How to regain your sexuality

If your disability is related to a spinal cord injury, I suggest reading my page on "Living with a Spinal Cord Injury."  Everything mentioned there applies to any disability.  For more help and understanding about sexuality and a spinal cord injury or any disability, I highly recommend reading the book titled: "The Ultimate Guide to Sex and Disability" featured in my reference pages.

Things to help with sexuality and intimacy

• Allow you and your partner time to get familiar with what has changed in your life.
• Allow and devote time for each other and your sexual relationship.
• Understand and practice psychogenic stimulation (non-genital) of psychic origin, meaning produced as a result of thoughts.
• Understand and practice reflexogenic stimulation (direct) which is physical stimulation of the genital organs by men or women.
• Use a lubricant.
• Engage in prolonged foreplay.
• Seek out new erogenous zones.
• Try to stimulate natural erections and arousal whenever possible.
• Engage with sexual toys; vibrators and arousal aids.
• Consult with your medical team for specific medications that can help with arousal and sexuality.
• Talk with a counsellor, a therapist, or join a group where you can talk about intimate issues.

Use positive self-talk

Be king to yourself.  Stay motivated.  Become your own cheerleader.  Demonstrate self-compassion.  Pat yourself on the back, especially if nobody else is around to do it for you.  Don’t wait for praise or comments from others; they may not come when you need them most.  If you don’t succeed; try again.  Making mistakes is part of the learning process.  Learn from your mistakes, your ups and downs and continue to move forward.  Remind yourself that everyone falls and positive people get back up. 

Develop tolerance

I never experienced how people interact either sublimely or physically until I was out an about on my own in my wheelchair.  People were either super courteous or they were oblivious of my presence or they were rude in their attitude as if making space for me or holding an elevator for me was an infringement of their space and time.  This made me look at my own behaviours towards disabled people before my SCI.  Did I act and behave that way?  The honest answer is yes!  This reality has taught me to be tolerant of people that just don’t understand what it means to live with a disability.  To know and understand tolerance is a gift.  After a while, you become immune to people’s ignorance.   Being tolerant also extends to medical professionals who fail to listen and make assumptions that are ill-founded or founded in their own beliefs and interpretations.  Tolerance requires a high level of patience.

Patience

As a disabled person, patience gradually becomes second nature as you are constantly waiting.  Whether it is waiting for an accessible taxi or transport vehicle; your therapist or PA to arrive to help you with your personal care; waiting for bloodwork, tests, or to see your doctor; it is a constant waiting game and that is because the loss of independence means having to wait for others.  Along with patience, it is crucial to learn how to remain calm, especially in difficult situations.  Losing your temper or over reacting helps nobody!  Losing your temper will only add to your stress and anxiety.  Learn patience, shrug things off as best you can, and carry on with your life.  Remember, don’t sweat the small stuff!

Adaptability

There will always be changes in your life whether you are disabled or not.  Changes are inevitable.  When you are disabled, you will be experiencing ongoing changes to your health, your physical situation, your living situation, and more.  This means that you have to learn to be very adaptable. 

Strategies for coping

If you are finding it difficult to adapt and deal with the stress and anxiety involved with change, there are many organizations, associations, agencies and community centres as well as family and friends that you can reach out to for help.  If you are religious or practice a faith; reach out to those support groups for help. 

Your attitude towards your disability and life is key.  Keeping yourself active, having physical activity to the level of your capability, practicing meditation or mindfulness and eating healthy nutritious foods are your guide to coping and surviving what lies ahead.

Solving and fixing problems

Disability teaches you to be strong and resilient, especially if you can master patience and adaptability.  As a disabled person you know that many of the special assist devices, walkers, wheelchairs, artificial limbs are always needing adjustments, repairs or modifications.  Sometimes the wait time to get repairs done can be quite long, which leads to you having to solve these problems with quick fixes.  Duct tape, hockey tape, electrical tape, safety pins, Velcro, twist ties and zip ties all come in handy.  Creating your own reaching assists out of an old broom stick or other can be very inventive.  Being able to sew or being crafty will be a huge gift.  There is a multitude of ways to solve day to day problems.  .

Determination

When you are disabled, you will experience many obstacles in your path.  You will have people that will want to help you—let them!  You will have people that will tell you that “You Can’t do it”—don’t listen to them.  A good example is going back to school, completing a degree or learning a new profession.  Another example might be getting involved in a theatre group or a community event.  Another example might be starting your own business or a new business.  Find a solution and prove them and yourself wrong.  Stand strong in your determination to accomplish your goals.  Be determined!

Stubbornness

Stubbornness is a skill that builds upon all of the above.  It teaches you how to think laterally, look at problems from different angles and solve problems.  Stubbornness is the quality of being determined to do what you want and refusing all else.  It is being adherent to your own ideas or desires. Stubbornness is a feeling of being in control. 

Gratefulness

Life is short!  It is too short to waste your time being down on yourself, others or your situation.  Enduring the ups and downs, tough days and great days helps one to appreciate life.  Learn and practice gratefulness for every day of your life.  Gratefulness is something that is felt on many levels—MIND, BODY, SPIRIT.

Empathy and acceptance

Everyone is dealing with something in their lives.  As a disabled person, you have experienced prejudice, discrimination and judgement.  You know how it feels and you would never wish to inflict the same on others.  Learn to accept others and what might be going on in their lives. Learn how to develop empathy for your own self-care and compassion.  Empathy will help you in your relationships with others and bring balance into your life.

Having a purpose

Whether you were born with a disability or the disability landed in your lap, you will never truly be happy and content until you can identify and own your life purpose.  What that purpose looks like is totally and completely up to you.  Finding your purpose may take years.  It is a natural progression and for many it is build upon the struggles that one is presented with and overcomes in life.  Everyone needs something to be passionate about, something to work towards, and something worth achieving. 

Having a disability does not mean that you have lost your purpose in life.  It simply means that you may have to redefine your purpose.  As an older or elderly person, purpose may mean spending more time with family and friends.  For a younger person, it may mean completing education or getting a job.  For someone who is disabled, purpose may mean overcoming difficult health and physical challenges, to be able to live a new normal.

Celebrate your successes

Stay focused on the gains that you are making in your life, no matter how small or insignificant they may seem.  Little steps add up to big steps.  Acknowledge what is working for you and maintain your momentum, especially when you feel like giving up.  Set markers for yourself so that you can review where you have been, where you are in this moment in time.  Celebrate these milestones with friends, family and community and loved ones.

Resource:  American Association of People with Disabilities
Resource:  National Organization on Disabilities
Resource:  Advocacy Group for People with Disabilities
Resource:  Motion Specialties
Resource:  Disability Resource Directory
Resource:  National Institute of Neurological Disorders and Stroke
Resource:  National Association for Incontinence
Resource:  Christopher Reeve Foundation
Resource:  United Spinal Cord Association
Resource:  North American Spinal Cord Consortium
Resource:  National Spine Health Foundation
Resource:  Spinal Cord.com
Resource:  Spinal Cord Injury Canada
Resource:  Spinal Cord Injury Ontario
Resource:  Mayo Clinic
Resource:  Health Line
Resource:  Very Well Health
Resource:  Pub Med
Resource:  National Library of Medicine
Resource:  Wikipedia