Some hard questions. Some suggestions. Some possible solutions…

The questions…

Do you, the member of society reading these words, view my son as inferior?
Do you, the members of society reading these words, think of me as someone not worthy of investing time and energy in knowing because I focus so intently on trying to survive on this journey with my son who has such complex and profound medical conditions and needs that I can be hard to socialise with or get to know?

Do you, the leaders of government who decide policy, view my son as a burden on the State, a “lesser-than” human being who will never be able to contribute financially into the system?
Do you, the leaders of government who decide policy, think of me as an additional burden on the State (along with my son), because at this point in time I have had to put my professional career on hold to care 24/7 for my disabled, palliative son?

Do you, the taxpayer resentful of paying taxes to help lift up the less-fortunate, resent my son because your taxes help to keep him alive?
Do you, the taxpayer resentful of paying taxes to help lift up the less-fortunate, resent me because as a full time carer I no longer pay income tax via an earned wage?

The suggestions…

If you, society, haven’t had the opportunity to meet, interact, and get to personally experience the love of a special needs child, I suggest you do. This isn’t a rose coloured glasses view of this journey, this is a sincere suggestion because I firmly believe that if you view my son and other children like him as inferior, you have missed one of life’s greatest lessons of compassion and unconditional love.

If you, the government, view my son, me, disabled children or adults, and their full time unpaid carers as burdens on the state who only take and never give, I invite you to meet with me and other parents and organisations, such as Profound Ireland , who are leading the way fighting for reforms and fair, equal rights for the disabled and their carers that will be of benefit to all considered.

If you, the resentful taxpayer, still resent those unable to contribute to the tax base via income tax contributions, no matter what logical arguments have been put before you, I implore you to examine how many millions of euros unpaid carers save the system each and every year by the tireless work they do in lieu of the State providing care assistance.

Some possible solutions…

If carers were fairly remunerated with a pensionable wage equal to the level of caring work that they perform, they would be able to pay income tax, no longer be relegated to the often frowned upon “social welfare recipient” status, and be able to join the private property housing market. There would be less of us on the social housing waitlists. There would be more of us on a livable wage recirculating money into the economy. And there would be the knock-on effect of carers having less mental health issues due to the current incredible financial stress, thus helping relieve an already struggling mental health system in Ireland. In fact, I go so far as to suggest that many physical and medical issues would also be avoided by not having these current financial and related emotional stressors.

A disabled child (of any age) should not be consigned to poverty because society or the government – or both – sees them as being inferior.

Nor should families be consigned to poverty because the parent(s) had to give up their paid professional career to provide full time caregiving to their disabled child, especially considering the parent(s) are given no other options such as full-time nursing care which would allow them to continue to work full-time.

And understand this clearly, if the disabled were not considered inferior, we would not be in this position of poverty. 

It MUST be understood that full-time, unpaid, family carers such as myself have had no choice but to enter into this role. It MUST also be understood that many of us are performing work equal to that of professional nurses, physios, occupational therapists, pharmacists, and more…often all of those professions combined into one role carried out around the clock with no supports. Many of us are highly skilled carers who have levels of experience that in the employment market would demand a wage which would provide a very decent standard of living.

Carers should be paid a pensionable wage commensurate with the level of skilled work they perform.

If the system, services and policies surrounding the disabled and their carers continues with the status quo, the long term economic cost will undoubtedly be far greater than if the above suggested reforms were implemented. The current system perpetuates poverty (both presently and in the retirement years as carers with no pension become elderly); it perpetuates a dependency on social welfare; it contributes to increasing mental and physical health issues within the family units; and, it contributes to the discriminatory and oppressive societal views of the disabled and their family carers as being inferior, unworthy, and a burden to be resented.

It is past time for reforms to be made,
but it is never too late to make those reforms.